[TMIC] RE: Stress
Boy, I would like to hear the responses to this. I have no resolve for you other than if you are Christian, read the Bible and pray. Know that you would be by his side if you were not in bed with the broken leg. Good luck and I wish you both the best. Carol in Logansport, IN Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: heyjude48...@aol.com Date: Tue, 22 Jan 2013 18:56:44 -0500 Subject: Stress To: ashfordrich...@bellsouth.net; pjv1...@chartermi.net; a-ry...@comcast.net; bpe...@yahoo.com; xbeecla...@gmail.com; ladylind...@yahoo.com; ladyno...@aol.com; a...@artfarm.com; k...@cole.gen.nz; patticoole...@gmail.com; bgunny7...@aol.com; r.c.pr...@verizon.net; snow121...@hotmail.com; j.d...@shaw.ca; jan...@centurytel.net; jcs...@yahoo.com; jefs...@aol.com; jlu...@eskimo.com; malugss...@gmail.com; thenavigato...@aol.com CC: tmic-list@eskimo.com Hello Guys Gals, How is everyone tonight? I honestly hope you are well and in good spirits. How does stress affect your life with TM? What do you do to alleviate it? How do you fight it? We just found out that my husband (Dave) has cancer of the blood with lesions on his liver. He got a call from his Dr. just a few minutes ago. He has to go in to talk to the Dr. on Thursday. I am so worried about him. I can't get out of this damn bed to even lift a finger to help him, because I have a broken leg. What are some of the things you do to combat stress in your lives? We are facing other things too that are considered major stressors on the stress scale. I really need your help on this. My TM is acting up like crazy. Hugs, Jude, Michigan Here's to the nights that turned into mornings, with the friends that turned into family...
[TMIC] RE: Need your input
Hey Jude!I have received a flu shot every year, except the first year, after the onset of TM. I became sick in June 2005. I have not noticed any complications. I think we all have to figure out the pros and cons. I have Type 2 Diabetis, heart disease (I had 6 bypasses when I was 49 years old). Yes, 6! I had 2 bypasses in 2 of the arteries. I don't know about now, but then I was told it would be better to make 2 shorter graphs than 1 longer one. Anyway, along with my doctors, my daughter an RN and my son-in-law a doctor, I have made the decision to get flu shots annually and pneumonia vaccine every 5-7 years as recommended. When I lived near Chicago, my neurologist was Dr. Joy Derwenskus at Northwestern where she was also an associate professor. Now that I live closer to Indianapolis, I see Dr. Margaret Frazer, in Carmel. She is with JWM Neurology and also works in research. As much as you can enjoy a doctor, I have enjoyed seeing both of them. I see no fault with them just get exasperated with all the unknowns of TM. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: heyjude48...@aol.com Date: Mon, 21 Jan 2013 11:53:38 -0500 Subject: Need your input To: samm...@fidmail.com; ginnahamil...@yahoo.com; k...@col.gen.nz; xring...@mwt.net; snow121...@hotmail.com; grace...@gmail.com; w2sm...@aol.com; r...@aol.com; thenavigato...@aol.com CC: tmic-list@eskimo.com; heyjude48...@aol.com Hi ladies and gentleman, This is Jude from TMIC. We are having two discussions and need your input. First, we are talking about the need for a neurologist when someone has TM, and the other topic is the need for flu shots, have you had them and what does your Dr. say about them. There has been quite a bit of activity lately, but we need more. Will be happy to answer any questions you have or talk about any topics you can think of. I miss hearing from you and hope you write in soon. In case you have forgotten the site it is: tmic-list@eskimo.com . If you need to receive the emails the address is: tmic-list-requ...@eskimo.com I love you all, Jude Michigan, USA
RE: [TMIC] have any of you ever heard of this
A good place to be, John. I like this dirt. :) Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. Date: Thu, 28 Jun 2012 11:36:18 -0700 From: jcs...@yahoo.com Subject: Re: [TMIC] have any of you ever heard of this To: robthe...@aol.com; jeffsmokeea...@yahoo.com; tmic-list@eskimo.com; msersl...@yahoogroups.com reminds me of my daily thought,,,tomorrow will be better...look forward to that day. and im talking about this side of the dirt! From: Robert Pall robthe...@aol.com To: jeffsmokeea...@yahoo.com; tmic-list@eskimo.com; msersl...@yahoogroups.com Sent: Thursday, June 28, 2012 12:07 PM Subject: Re: [TMIC] have any of you ever heard of this I have never heard anything like this beforebut wouldn't it be wonderful if it happened! Rob in NJ -Original Message- From: jeff bernier jeffsmokeea...@yahoo.com To: tmic-list tmic-list@eskimo.com; MSersLife msersl...@yahoogroups.com Sent: Thu, Jun 28, 2012 11:32 am Subject: [TMIC] have any of you ever heard of this i have been hearing alot of stories and even know someone who experienced this.i heard of a woman who was dx with ms 20 years ago and spent a vast majority of this time in a wheelchair and suffered through all crazy stuff we do,tingling,numbness,muscle spasms,bladder issues(etc.etc).she woke up one morning and put her legs over the side of the bed stood up and walked and had no symptoms at all ,other than some muscle weakness which therapy took care of,she is symptom free and is living a normal life like nothing ever happened. jeff tm2000,ms2005
[TMIC] TM Question
I curious about the proper way to explain our affliction.Do we currently have TM or we had it when we first became ill?Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
RE: [TMIC] Pain
Try sitting and relaxing! Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. Date: Thu, 9 Feb 2012 07:38:49 -0500 Subject: Re: [TMIC] Pain From: malugss...@gmail.com To: skle...@cox.net; jan...@centurytel.net CC: tmic-list@eskimo.com Don't think it's just you ladies; I stand in front of the porcelain throne, with my legs aching, waiting, and begging, Please, please …. Dalton From: Susan Kleinz skle...@cox.net Date: Wed, 8 Feb 2012 20:57:45 -0700 To: Janice Nichols jan...@centurytel.net Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Pain Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 8 Feb 2012 20:44:53 -0800 no, but it takes me a long time to pee! On Feb 6, 2012, at 6:12 PM, Janice Nichols wrote: Ladies, Do any of you have burning sensations or spasms around/in your urethra? I do, and have since TM struck. I also feel a spasm in the urethra when I need to urinate. Does any of this sound familiar? Janice
RE: [TMIC] Fwd: [Transverse Myelitis Folks] New video
Great work Rob. I love the video. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. Date: Sun, 8 Jan 2012 09:58:21 -0800 From: brad...@gmail.com To: robthe...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Fwd: [Transverse Myelitis Folks] New video Oh My!!!..how heart warming..I love the video. made me cry first thing this morning! Seeing my face along with everyone else's made it come home to me..excellent job Greg, thanks for posting it Robert. ---Original Message--- From: Robert Pall Date: 01/08/12 09:21:28 To: tmic-list@eskimo.com Subject: [TMIC] Fwd: [Transverse Myelitis Folks] New video Click on Transverse Myelitis Awarenessthe 5 minute video is excellent! Rob in New Jersey -Original Message- From: Greg Sapp notification+a2wes...@facebookmail.com To: Transverse Myelitis Folks tmf...@groups.facebook.com Sent: Mon, Jul 18, 2011 5:15 pm Subject: [Transverse Myelitis Folks] New video Greg Sapp posted in Transverse Myelitis Folks. Greg Sapp 5:15pm Jul 18 Transverse Myelitis Awareness 2011 www.youtube.comTransverse Myelitis Awareness 2011 View Post on Facebook · Edit Email Settings · Reply to this email to add a comment. attachment: paper4.gif
RE: [TMIC] Extent of your TM? Pins and Needles
My neuro just ordered PT again and to be fitted for a brace for my drop foot. I have not scheduled it yet and while part of the reason was the holidays, the other reason was I didn't want to wear a brace or the stigma associated with it. I probably need to rethink it. At this time, I take no medications for the TM. I have in the past tried Gabapentine, Baclofen and Lyrica (not at the same time). This was about 2 years ago when I was working and I just couldn't seem to adjust to them and work at the same time. I don't consider the pins and needles sensation that I have to be very bad. I can tolerate it. It's the feeling that I am walking on tree stumps that bothers me more. Cold temperatures also make my legs very uncomfortable.Maybe 2 or 3 times per month I have to take Hydrocodone, but that is for some bulging disks that I have. I am getting a steroid injection in the morning for a pinched nerve. I'm sure walking cockeyed with the cane does not help my disk problems. My right knee and hip has also been bothering me. My knee is clicking but both just ache. Sometimes I think, what NEXT, but I am so thankful that I am as good as I am. Carol CC: patticoole...@gmail.com; snow121...@hotmail.com; molokai...@gmail.com; tmic-list@eskimo.com From: skle...@cox.net Subject: Re: [TMIC] Extent of your TM? Pins and Needles Date: Fri, 6 Jan 2012 13:36:24 -0700 To: xbeecla...@gmail.com Betty:I have many residual affects as you do.I wear an orthopedic brace on one leg.Helps with my drop foot.wear orthhodics in all my shoes.My Neuro meds are: Baclofen, Gabapentine, Savella,Zoloft.I also rely on IbprophenI also have:daily nausea (I take Zophran daily)band painelbow and hand pain(carpal tunnel surgery on one hand next week)Leg weaknesspopping knees and a large Baker's Cyst on the back of one because my knees are bone on bone from walking funny for 20 years!and I know how lucky I am to have what I do.I miss my old life.Best of luck to all of us!Susan - Phx, AZOn Jan 6, 2012, at 1:22 PM, Elizabeth Clark wrote:Patti Carol…My case is also very similar to the two of you… woke up with a numb arm and within 36 hrs., was paralyzed in the ER, given massive steroids for four days and spent a month at a re-hab facility in aggressive physical and occupational therapy learning to walk and use my hands again. I went from using a cane (and wheelchair or scooter when needed), to hiking sticks, to now only a cane when on long walks (like the mall) or wearing a light-weight “TrueLife” brace on my left leg to help with my balance – it prevents tripping due to a “drop foot” condition. I also wear a compression stocking with the brace to help keep my left ankle from swelling. My question to you is, are either of you on any pain or nerve medication? I don’t seem to get the pins and needles sensation or hot/cold feeling unless I am at the very end of my medication cycle (I take Hydrocodone and Gabapentin every 6 hrs.). I’ve taken to wearing one pair of regular socks and adding a pair of “ankle” socks on top which keeps my feet feeling relatively normal. Maybe I have just adapted to the feeling after nearly six years with TM. Actually my knees bother me more than my feet. I get “twinges” at times and if I torque my body in any way or have to climb my stairs too many times a day, they get really painful. Given the extremes that many TM’rs suffer, I too feel very fortunate my condition is no worse than it is. If this is what I deal with for the rest of my life, then so be it – I can do it. My only wish is that they find either some way to prevent it or at least some way to treat it effectively for all so no one ever has to suffer – especially the children! It’s hard for anyone, but my heart goes out to the little ones! Bless you all,Betty(in Northern California) From: pat cooley [mailto:patticoole...@gmail.com] Sent: Friday, January 06, 2012 10:57 AM To: Carol E Cc: molokai...@gmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Extent of your TM? Pins and Needles Carol your story sounds just like mine. I too now get around the house without cane/walker but I do use a cane when I gol out. I am able to walk around most stores hangingj on to the cart but if I go to stores where I have to do a lot of walking I take my electric scooter and then I can power shop with the best of them. I still have the pins needles and the burning/freezing in my feet and up to my knees. I know this is the way it will always be since it has been almost 4 yrs, but I see that I am not suffering as much as so many of us TMers. Patti in WisconsinOn Thu, Jan 5, 2012 at 5:27 PM, Carol E snow121...@hotmail.com wrote:Jim, June 2005, I went to bed with severe pins and needles feeling in my right leg. When I woke up, it was as limp as a noodle. I was admitted through the ER and received IV steroids, I think it was 9 hours. During my 5 week stay in the hospital, I received
RE: [TMIC] Extent of your TM? Pins and Needles
Jim, June 2005, I went to bed with severe pins and needles feeling in my right leg. When I woke up, it was as limp as a noodle. I was admitted through the ER and received IV steroids, I think it was 9 hours. During my 5 week stay in the hospital, I received intensive PT. About 3 weeks into my physical therapy, I remember the therapist told me to try to wiggle my toes. I looked her like she was seriously crazy. I triedand they moved (very little, but they moved). Brought both of us to tears. Before my discharge, I was walking small distances with a walker and I know use a cane. I continued with out patient physical therapy for about 2 months. My power shopping days are over, LOL! but I can walk in, get what I need, and leave. On bad days, I don't even try it. Both legs feel very heavy, but my right leg is worse. I too have pins and needles torture from my toes up to my waist. Carol Date: Tue, 3 Jan 2012 11:55:22 -1000 From: molokai...@gmail.com To: tmic-list@eskimo.com Subject: [TMIC] Extent of your TM? Pins and Needles From the discussion of Pins and Needles it seems that most of you are able to get around and have some use of your legs. I have pins and needles from my feet to my belly and no use of my legs at all. And they weigh a ton. Been like this since day one. Did any of you lose the use of your legs and then get them back? If so, how long did it take and how did you do it? Jim
[TMIC] No Messages
I have not received 1 message for a month. What happened? Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
[TMIC] Hello
Just testing to see if I am still on the list. I'm not receiving messages. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
RE: [TMIC] disbaled social security benefits
I received my 1st check Oct 2010 and just sent my taxes to my preparer (yesterday) and asked him the same question, but he has not emailed me back yet. However, according to the government website, it is usually not taxed but depends on other income you might have. http://www.socialsecurity.gov/planners/taxes.htm Some people have to pay federal income taxes on their Social Security benefits. This usually happens only if you have other substantial income (such as wages, self-employment, interest, dividends and other taxable income that must be reported on your tax return) in addition to your benefits. Carol in Logansport, IN Date: Fri, 8 Apr 2011 14:07:57 -0700 From: jcs...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] disbaled social security benefits to anyone receiving disabled social security monies. I received a letter today stating that I will receive my first check May 11th. signed up for it on Nov 5th. wont get any retro pay. is this money taxed?
RE: [TMIC] February Birthdays
Happy Birthday to all you February kids. My favorite birthday quotes: You know you are getting old when the candles cost more than the cake ~ Bob Hope Inside every older person is a younger person wondering what the hell happened ~ Cora Harvey Armstrong I moved on 1/1/11. A move date I am not likely to forget. Carol in Logansport, IN (formerly from Addison, IL) Date: Mon, 31 Jan 2011 23:52:25 -0500 From: barbara...@gmail.com To: tmic-list@eskimo.com; jharpe...@aol.com Subject: [TMIC] February Birthdays Happy Birthday to the February kids! Please send any additions or corrections to: 2-1 Jeanne Rushton (jrush...@columbiaenergyllc.com) 2/2 Ursula (uma...@t-online.de) 2/2 Lisa in TN (lsim...@aol.com) 2-5 Tita in Delaware (te...@flash.net ) 2-6 Barbara Alma (balmat...@aol.com) 2-7 Barbara in Texas (babbsie1...@yahoo.com) 2-9 Frank (ftrascr...@aol.com) 2/11 Mary (mster...@yahoo.com ) 2-11 Deb Casey (casey...@myway.com) 2/15 Jill (jillybean60...@yahoo.com) 2-17 JOAN FINK (2-17 mafi...@yahoo.com) 2-20 Norma (dgti...@aol.com) 2/26 Patti - Michigan (pjv1...@chartermi.net) 2/27 Cindy (rdavi...@san.rr.com)
RE: [TMIC] off topic
No words can express what you and your family are going through. You have my deepest sympathy. Your only consolation is knowing she is now at peace. Carol in Addison, IL From: celr...@aol.com Date: Thu, 2 Dec 2010 12:11:06 -0500 To: TMIC-LIST@eskimo.com Subject: [TMIC] off topic Since you are all part of my cyber family I wanted to ask for prayer for my family and me. My daughter died yesterday. She was 41 and diabetic, on dialysis, poor health. Her daughter was with her and it was sudden. She didn't say anything just collapsed and that was it. She had been through s much all her life and now she is at rest with the Lord. Her name is Pamela Caldwell. No more needles and hospitals. Please forgive me if I offend anyone but I needed to talk. Jane/Splendora Tx
RE: [TMIC] December Birthdays
Happy Birthday to all! Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. Date: Thu, 2 Dec 2010 08:11:04 -0500 From: barbara...@gmail.com To: tmic-list@eskimo.com Subject: [TMIC] December Birthdays Happy Birthday to the December kids! Please send any additions or corrections to tmic-list@eskimo.com 12-2 Meghan (bluemeg...@hotmail.com) 12/2 Ashlee Black (tracey.bl...@hnoins.com) 12/3 Janice (jan...@centurytel.net) 12-3 Wim from Holland (wim_from_holl...@hotmail.com) 12- 4 Jan Burgess (ja...@rogers.com) 12-7 Patti in Wisconsin (patticoole...@gmail.com) 12-8 Lori Malloy (jorlcummi...@earthlink.net) 12-10 Shirley from UK (shirley.up...@dsl.pipex.com) 12-15 Alton Ryder(a-ry...@comcast.net) 12-15 CarolAnn B.L. from South Carolina, USA (ladycame...@aol.com) 12-18 Rod Jenke (rktje...@chariot.com.au) 12/23 Roger Pratt (r.c.pr...@verizon.net ) 12-25 Gilly (gilly...@y7mail.com) 12/31 Janet (j.d...@shaw.ca)
RE: [TMIC] Cat Scan Adverse Reaction
I went to Mayo Clinic this past September and had 2 MRI's with and without contrast and had no problems. And with the MRI's I was flat on my back for and hour or longer. The CT was only something like 15 minutes. Both flat on my back. This contrast felt different. Thanks for your feedback. As we all should do with any issues we have, I documented who I talked to at the doctor's office, the time I called, what she said and what I said. (for what it's worth). Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: patticoole...@gmail.com To: snow121...@hotmail.com; tmic-list@eskimo.com Subject: RE: [TMIC] Cat Scan Adverse Reaction Date: Thu, 25 Nov 2010 09:02:05 -0600 Carol I just had a 2 hour MRI with and without contrast. The only discomfort I had was from lying flat on my back which is always so painful. I never could do that even before TM. However, once the MRI was finished and I was up, I didn’t have any pain. If it doesn’t go away soon, I would see your I.M. doc. Patti - Wisconsin From: Carol E [mailto:snow121...@hotmail.com] Sent: Wednesday, November 24, 2010 2:02 PM To: tmic-list@eskimo.com Subject: [TMIC] Cat Scan Adverse Reaction Has anyone ever had adverse reaction to a cat scan with contrast. I don't know if I had an adverse reaction or sheer coincidence, but about 30-60 minutes after the cat scan, I developed pain (I think neurological) which I still have 24 hours later. My lesions are at T7-T10 and this pain is about 3-4 inches right of my spine and about 4 inches up from my waist and in my groin area on the right side. I reported this to my Internal Medicine doctor's nurse and naturally she said it could not be from the radiation or the contrast but rather just lying on the hard table for 15 minutes. I didn't feel uncomfortable, but I could have strained getting off the table. I tend to think that the pain in my back is neurological and the pain in my groin is muscle, but I don't know. Respond if you have any ideas. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
[TMIC] Happy Thanksgiving
Happy Thanksgiving to everyone. Carol in Addison Worrying does not empty tomorrow of its troubles; It empties today of its strengths. Happy Thanksgiving http://cid-d2b704177c815ce4.skydrive.live.com/redir.aspx?page=browseresid=D2B704177C815CE4!166type=5Bpub=SDX.PhotosBsrc=Photomailauthkey=*wYUH71B4EQ%24
RE: [TMIC] Money
The cash is in the mail. :) Have a great Thanksgiving and Birthday. How does it feel to be 60 + ? Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: bgunny7...@aol.com Date: Wed, 24 Nov 2010 11:59:32 -0500 To: Tmic-list@eskimo.com Subject: [TMIC] Money Please don't send birthday cards tomorrow as it is my birthday. Please send cash or money order for my retirement fund. I'll hold my breath.
[TMIC] Cat Scan Adverse Reaction
Has anyone ever had adverse reaction to a cat scan with contrast. I don't know if I had an adverse reaction or sheer coincidence, but about 30-60 minutes after the cat scan, I developed pain (I think neurological) which I still have 24 hours later. My lesions are at T7-T10 and this pain is about 3-4 inches right of my spine and about 4 inches up from my waist and in my groin area on the right side. I reported this to my Internal Medicine doctor's nurse and naturally she said it could not be from the radiation or the contrast but rather just lying on the hard table for 15 minutes. I didn't feel uncomfortable, but I could have strained getting off the table. I tend to think that the pain in my back is neurological and the pain in my groin is muscle, but I don't know. Respond if you have any ideas. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
RE: [TMIC] stem cell treatment for spinal cord lesions
This is great news! It won't affect me (5 years post-injury) but I am so happy there is progress being made. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: fr...@franksheldon.com To: tmic-list@eskimo.com Date: Mon, 15 Nov 2010 14:10:01 + Subject: [TMIC] stem cell treatment for spinal cord lesions News release: StemCells, Inc. Files to Conduct Neural Stem Cell Trial in Chronic Spinal Cord Injury PALO ALTO, Calif., Nov 15, 2010 (GlobeNewswire via COMTEX) -- StemCells, Inc. (Nasdaq:STEM) announced today that is has filed an application with Swissmedic, the Swiss regulatory agency for therapeutic products, to conduct a clinical trial in Switzerland of the Company's HuCNS-SC(R) purified human neural stem cells in chronic spinal cord injury patients. If authorized, the study would enroll patients who are three to 12 months post-injury. With this filing we have taken a tangible step to broaden the clinical development of our HuCNS-SC product candidate beyond the brain and into the spinal cord, said Martin McGlynn, President and CEO of StemCells, Inc. This exciting initiative is supported by extensive preclinical research demonstrating the ability of our proprietary cells to restore lost motor function when transplanted in the chronic spinal cord injury setting. The prospect of extending the treatment window to months or longer following injury would mean that a much larger population of injured patients could potentially benefit from such an approach.
RE: [TMIC] brain storm (on topic)
I have not experienced this and sorry that you are. Carol in Addison, IL Date: Sun, 14 Nov 2010 06:51:32 -0800 From: jcs...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] brain storm (on topic) has anyone while enduring a spasm felt like their very brain was experiencing a spasm, fighting for consciousness? perhaps it was the combo of spasm and meds and who knows what but it was kinda scary. John from the deep hollows of the undiscovered land of West Virginia
RE: [TMIC] Shingles Vaccine
My Internal Medicine doc wants me to get every vaccine made. I really don't think she takes into consideration the affects that it might have on patients with TM. I will call my neurologist to get her recommendation and then make up my mind. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. Date: Fri, 12 Nov 2010 05:37:15 -0800 From: lynnemye...@yahoo.com Subject: Re: [TMIC] Shingles Vaccine To: tmic-list@eskimo.com My physicians have told me since the begining of my TM not to get any vaccines. They are all afraid it will put my immune system into over drive again and cause a flare up or possible recurrance. So none for me, even though I have had shingles twice since getting TM and they are definately not fun. Lynne --- On Thu, 11/11/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: [TMIC] Shingles Vaccine To: tmic-list@eskimo.com Date: Thursday, November 11, 2010, 6:29 PM What every ones opinion on getting the vaccine for shingles? I'm 60 and last week for my annual physical, my doctor recommended that I get the shingles vaccine. I didn't get, because I wanted to ask the TM group and the medical people on the list. Carol in Addison, IL
RE: [TMIC] Shingles Vaccine
I sure agee with that. Wished I had asked the neurologist when I went to Mayo Clinic in Sept. I made a list of things to ask, but I just didn't think of very thing. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: snow121...@hotmail.com To: lynnemye...@yahoo.com; tmic-list@eskimo.com Subject: RE: [TMIC] Shingles Vaccine Date: Fri, 12 Nov 2010 07:47:39 -0600 My Internal Medicine doc wants me to get every vaccine made. I really don't think she takes into consideration the affects that it might have on patients with TM. I will call my neurologist to get her recommendation and then make up my mind. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. Date: Fri, 12 Nov 2010 05:37:15 -0800 From: lynnemye...@yahoo.com Subject: Re: [TMIC] Shingles Vaccine To: tmic-list@eskimo.com My physicians have told me since the begining of my TM not to get any vaccines. They are all afraid it will put my immune system into over drive again and cause a flare up or possible recurrance. So none for me, even though I have had shingles twice since getting TM and they are definately not fun. Lynne --- On Thu, 11/11/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: [TMIC] Shingles Vaccine To: tmic-list@eskimo.com Date: Thursday, November 11, 2010, 6:29 PM What every ones opinion on getting the vaccine for shingles? I'm 60 and last week for my annual physical, my doctor recommended that I get the shingles vaccine. I didn't get, because I wanted to ask the TM group and the medical people on the list. Carol in Addison, IL
[TMIC] Shingles Vaccine
What every ones opinion on getting the vaccine for shingles? I'm 60 and last week for my annual physical, my doctor recommended that I get the shingles vaccine. I didn't get, because I wanted to ask the TM group and the medical people on the list. Carol in Addison, IL
RE: [TMIC] hello out there
I also have the residuals as Linda mentioned...burning, banding, weakness, bladder control. Sometimes I can void normally (pre TM) and other times I have to sit on the pot for 5 minutes to void. I feel like I am about to burst, but nothing comes out. I wiggle and wiggle and finally a slow trickle that takes maybe another 3 minutes. I would say about half the time I void normally and half of the time, I don't. This week, my back is killing me. It started Saturday with a burning itching sensation and then Sunday immense pain began about 3 inches lower, about waist level and lower. My hips hurt and painful when I stand and bear weight. I was taking Aleve for my discomfort and this week I graduated to Vicodin and Flexeril. I'm not sure, but I think my pain is from spinal stenosis and bulging disks instead of the TM. I have scheduled my 2nd Lumbar Epidural for next week, if I still need it. Would have gone this week, but I have to discontinue Plavix, aspirin and Aleve before I can get the epidural. What a zoo! Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: cherp...@msn.com To: malugss...@gmail.com; tmic-list@eskimo.com; snow121...@hotmail.com Subject: Re: [TMIC] hello out there Date: Tue, 9 Nov 2010 21:16:00 -0700 This is what I have been told also. My lesions can still be seen but they are inactive (C4,5,6). I was told they are like a scar. However, I've seen posts where others have been told something different. Dalton, I still have all the residuals - burning, banding, weakness - it's just that some days are better than others. It's going on 9 years for me. Hope you get to feeling better! Linda in Eagle, ID - Original Message - From: Carol E To: malugss...@gmail.com ; tmic-list@eskimo.com Sent: Tuesday, November 09, 2010 9:04 PM Subject: RE: [TMIC] hello out there Hi Dalton and all, I was 1st diagnosed with TM June 2005. I had lesions from T7-T10. Every time I have new MRI's, I am always told that I have no new lesions, but they can still see the old ones which are inactive. So I would say the lesions do not go away, they are there like a scar. Carol in Addison, IL Date: Wed, 10 Nov 2010 07:50:59 +0400 Subject: Re: [TMIC] hello out there From: malugss...@gmail.com To: jan...@centurytel.net; balmat...@aol.com; tmic-list@eskimo.com Hey, Janice! We missed you. And I missed you. Glad to have you back with us. I have a question for everyone. A recent set of MRIs showed that my spine in the thoracic was clear with no lesions or swellings. It has been one year since the diagnosis for TM. Do these lesions clear up later on, or did somebody make a mistake somewhere? Because my everyday symptoms are still weakness and pain from fingers to just above the elbow, and from toes to above the knees with banding and burning in the torso and back. And if I exercise at all, the next day I am in for day-long spasms that leave me housebound and often unable to get around without assistance of my dear part-time maid and helper. Could someone get back to me on this? Thanks a lot. Dalton From: Janice Nichols jan...@centurytel.net Date: Tue, 9 Nov 2010 19:28:29 -0600 To: Dalton Garis malugss...@gmail.com, Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Subject: Re: [TMIC] hello out there I do too, Dalton.You have a different set of problems that I have not heard in other TM'ers. Sure wish you would get you act together - scares me!!! Seriously, I hope that is the last day you will have like that. Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Sunday, November 07, 2010 10:23 AM To: Barbara Alma mailto:balmat...@aol.com ; tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what
RE: [TMIC] {TMIC}sweating
I have my thermostat set at 68 degrees. I sleep with long johns and socks.
Pretty picture, huh? I will wake up sweating on my face and turn on my ceiling
fan, then I get cold and turn off the ceiling fan and this continues through
out the night. Good thing I only sleep with pillows. And thank God I have a
remote controlled ceiling fan so I don't need to get out of bed. I also have
the on and off sweating during the day and way past the change.
Carol
Worrying does not empty
tomorrow of its troubles;
It empties today of its strengths.
Date: Wed, 10 Nov 2010 08:59:25 -0800
From: rn11...@yahoo.com
Subject: Re: [TMIC] {TMIC}sweating
To: jcs...@yahoo.com
CC: tmic-list@eskimo.com
mixed or misunderstood signals from the brain to the body functions due to the
nerve damage
John,
I understand that. But,the lesion being thoracic (chest) means I should only
be affected below that level-not anywhere above it. The numbness is still from
that level (T4) down,with a few areas of extreme sensitivity scattered
around.That's what confused them and me about the sweating.
15 yrs later and still no explanation.
cheryl
--- On Wed, 11/10/10, john snodgrass jcs...@yahoo.com wrote:
From: john snodgrass jcs...@yahoo.com
Subject: Re: [TMIC] {TMIC}sweating
To: transverse myelitis tmic-list@eskimo.com
Date: Wednesday, November 10, 2010, 10:10 AM
mixed or misunderstood signals from the brain to the body functions due to the
nerve damage.
kinda odd when i flew to fort knox KY i had to fly to PA to catch that
flight.
if i had missed the PA connection i would not have made it to fort knox.
i think the brain works the same way. if theres a connection problem anywhere
then it will send signals or block signals trying to resolve the problem and if
it cant then it does all kinds of wierd stuff.
sometimes i wish mine would stop trying and just turn the lights out and go to
sleep but that would be a stroke ,,thats a bad thought.
if the Docs understood and could manipulate these things they would make way
more than they do.
--- On Wed, 11/10/10, rn11...@yahoo.com rn11...@yahoo.com wrote:
From: rn11...@yahoo.com rn11...@yahoo.com
Subject: [TMIC] {TMIC}sweating
To: tmic-list@eskimo.com
Date: Wednesday, November 10, 2010, 9:30 AM
Hi Everyone,
I got tm at the thoracic level (T4-5),but when I perspire on my face,one
side gets red and moist,the other stays pale and dry. No one has ever had an
explanation for this.A couple of docs even suggested that maybe I always had
this and just noticed it after tm!
Cheryl in Easthampton,MA
RE: [TMIC] hello out there
With the exception of my face, I don't have any problems staying dry at night. I very seldom get up during the night to go to the bathroom...maybe once a month I have to get up. When I get up in the morning, I don't usually have the urge and can't go even if I try. Then after 2 cups of coffee, my mind decides it's time. Sometimes it's a quick process and other times it takes forever, even though I feel like I am bursting. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: jan...@centurytel.net To: jcs...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Date: Wed, 10 Nov 2010 10:42:55 -0600 Carol, how are you at staying dry during the nite? I have a real problem with that and always have to wear protection and sometimes that doesn't always work. Can't seem to feel enough yet to wake up in time. I can go 2-3 weeks and have a real wetting problem and then I can go for a couple of weeks and stay fairly dry. We can't seem to pin down the reason for this. I am beginning to think on the days that I don't take a nap (45min to hour) that I sleep too hard and don't feel the urge until it is too late.Time will tell. It is the pits! Janice From: john snodgrass Sent: Wednesday, November 10, 2010 10:15 AM To: transverse myelitis Subject: RE: [TMIC] hello out there Carol E, your sunday to present condition sounds almost exactly like mine. heavy sigh. --- On Wed, 11/10/10, Carol E snow121...@hotmail.com wrote: From: Carol E snow121...@hotmail.com Subject: RE: [TMIC] hello out there To: malugss...@gmail.com, tmic-list@eskimo.com Date: Wednesday, November 10, 2010, 11:06 AM I also have the residuals as Linda mentioned...burning, banding, weakness, bladder control. Sometimes I can void normally (pre TM) and other times I have to sit on the pot for 5 minutes to void. I feel like I am about to burst, but nothing comes out. I wiggle and wiggle and finally a slow trickle that takes maybe another 3 minutes. I would say about half the time I void normally and half of the time, I don't. This week, my back is killing me. It started Saturday with a burning itching sensation and then Sunday immense pain began about 3 inches lower, about waist level and lower. My hips hurt and painful when I stand and bear weight. I was taking Aleve for my discomfort and this week I graduated to Vicodin and Flexeril. I'm not sure, but I think my pain is from spinal stenosis and bulging disks instead of the TM. I have scheduled my 2nd Lumbar Epidural for next week, if I still need it. Would have gone this week, but I have to discontinue Plavix, aspirin and Aleve before I can get the epidural. What a zoo! Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. From: cherp...@msn.com To: malugss...@gmail.com; tmic-list@eskimo.com; snow121...@hotmail.com Subject: Re: [TMIC] hello out there Date: Tue, 9 Nov 2010 21:16:00 -0700 This is what I have been told also. My lesions can still be seen but they are inactive (C4,5,6). I was told they are like a scar. However, I've seen posts where others have been told something different. Dalton, I still have all the residuals - burning, banding, weakness - it's just that some days are better than others. It's going on 9 years for me. Hope you get to feeling better! Linda in Eagle, ID - Original Message - From: Carol E To: malugss...@gmail.com ; tmic-list@eskimo.com Sent: Tuesday, November 09, 2010 9:04 PM Subject: RE: [TMIC] hello out there Hi Dalton and all, I was 1st diagnosed with TM June 2005. I had lesions from T7-T10. Every time I have new MRI's, I am always told that I have no new lesions, but they can still see the old ones which are inactive. So I would say the lesions do not go away, they are there like a scar. Carol in Addison, IL Date: Wed, 10 Nov 2010 07:50:59 +0400 Subject: Re: [TMIC] hello out there From: malugss...@gmail.com To: jan...@centurytel.net; balmat...@aol.com; tmic-list@eskimo.com Hey, Janice! We missed you. And I missed you. Glad to have you back with us. I have a question for everyone. A recent set of MRIs showed that my spine in the thoracic was clear with no lesions or swellings. It has been one year since the diagnosis for TM. Do these lesions clear up later on, or did somebody make a mistake somewhere? Because my everyday symptoms are still weakness and pain from fingers to just above the elbow, and from toes to above the knees with banding and burning in the torso and back. And if I exercise at all, the next day I am in for day-long spasms that leave me housebound and often unable to get around without assistance of my dear part-time maid and helper. Could someone get back to me on this? Thanks a lot. Dalton From: Janice Nichols jan...@centurytel.net Date: Tue, 9 Nov 2010 19:28:29 -0600
RE: [TMIC] {TMIC}sweating
As well all know...we are a very special group of people. :)
Carol
Worrying does not empty
tomorrow of its troubles;
It empties today of its strengths.
Date: Wed, 10 Nov 2010 09:42:32 -0800
From: hwyfli...@yahoo.com
Subject: Re: [TMIC] {TMIC}sweating
To: rn11...@yahoo.com; tmic-list@eskimo.com
I have been totally confused about the sweating issue ever since TM hit me
My lesions are L4, L5 and S1 and now since TM, the only place I sweat is my
head and when I sweat, I sweat profusely, I mean to the point that it drips off
my nose and down the sides of my head...
I sweat no other place on my body, even during the summer on hot days outside.
I get warm, but I do not sweat. No underarm sweat, nothing.
From: rn11...@yahoo.com rn11...@yahoo.com
To: tmic-list@eskimo.com
Sent: Wed, November 10, 2010 9:30:57 AM
Subject: [TMIC] {TMIC}sweating
Hi Everyone,
I got tm at the thoracic level (T4-5),but when I perspire on my face,one
side gets red and moist,the other stays pale and dry. No one has ever had an
explanation for this.A couple of docs even suggested that maybe I always had
this and just noticed it after tm!
Cheryl in Easthampton,MA
RE: [TMIC] {TMIC}sweating
I sure believe that! (Internal thermostat not working properly).
Carol
From: patticoole...@gmail.com
To: jan...@centurytel.net; hwyfli...@yahoo.com; rn11...@yahoo.com;
tmic-list@eskimo.com
Subject: RE: [TMIC] {TMIC}sweating
Date: Wed, 10 Nov 2010 12:31:56 -0600
I have been reading all your posts about sweating, and I guess I am an odd
case. I don’t have any problems with hot weather. I have always sweat more in
my hair than anywhere else, even before TM. My problem is the cold. I am
always cold so I guess that is why the hot weather doesn’t affect me too much.
I do like sleeping in a cool room and like lots of blankets. I was told with
TM your internal thermostat is not working properly.
Patti - Wisconsin
From: Janice Nichols [mailto:jan...@centurytel.net]
Sent: Wednesday, November 10, 2010 12:09 PM
To: kevin weilacher; rn11...@yahoo.com; tmic-list@eskimo.com
Subject: Re: [TMIC] {TMIC}sweating
Ditto! Janice
From: kevin weilacher
Sent: Wednesday, November 10, 2010 11:42 AM
To: rn11...@yahoo.com ; tmic-list@eskimo.com
Subject: Re: [TMIC] {TMIC}sweating
I have been totally confused about the sweating issue ever since TM hit me
My lesions are L4, L5 and S1 and now since TM, the only place I sweat is my
head and when I sweat, I sweat profusely, I mean to the point that it drips off
my nose and down the sides of my head...
I sweat no other place on my body, even during the summer on hot days outside.
I get warm, but I do not sweat. No underarm sweat, nothing.
From: rn11...@yahoo.com rn11...@yahoo.com
To: tmic-list@eskimo.com
Sent: Wed, November 10, 2010 9:30:57 AM
Subject: [TMIC] {TMIC}sweating
Hi Everyone,
I got tm at the thoracic level (T4-5),but when I perspire on my face,one
side gets red and moist,the other stays pale and dry. No one has ever had an
explanation for this.A couple of docs even suggested that maybe I always had
this and just noticed it after tm!
Cheryl in Easthampton,MA
RE: [TMIC] hello out there
Hi Dalton and all, I was 1st diagnosed with TM June 2005. I had lesions from T7-T10. Every time I have new MRI's, I am always told that I have no new lesions, but they can still see the old ones which are inactive. So I would say the lesions do not go away, they are there like a scar. Carol in Addison, IL Date: Wed, 10 Nov 2010 07:50:59 +0400 Subject: Re: [TMIC] hello out there From: malugss...@gmail.com To: jan...@centurytel.net; balmat...@aol.com; tmic-list@eskimo.com Hey, Janice! We missed you. And I missed you. Glad to have you back with us. I have a question for everyone. A recent set of MRIs showed that my spine in the thoracic was clear with no lesions or swellings. It has been one year since the diagnosis for TM. Do these lesions clear up later on, or did somebody make a mistake somewhere? Because my everyday symptoms are still weakness and pain from fingers to just above the elbow, and from toes to above the knees with banding and burning in the torso and back. And if I exercise at all, the next day I am in for day-long spasms that leave me housebound and often unable to get around without assistance of my dear part-time maid and helper. Could someone get back to me on this? Thanks a lot. Dalton From: Janice Nichols jan...@centurytel.net Date: Tue, 9 Nov 2010 19:28:29 -0600 To: Dalton Garis malugss...@gmail.com, Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Subject: Re: [TMIC] hello out there I do too, Dalton.You have a different set of problems that I have not heard in other TM'ers. Sure wish you would get you act together - scares me!!! Seriously, I hope that is the last day you will have like that. Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Sunday, November 07, 2010 10:23 AM To: Barbara Alma mailto:balmat...@aol.com ; tmic-list@eskimo.com Subject: Re: [TMIC] hello out there Actually; I had a day-long attack of spasms yesterday which left me unable to control either my hands and arms, legs, torso or speech. Every time I tried to talk I would cramp up. And Elvis was definitely being channeled in my body. Thank heavens I had the assistance of a very nice and strong maid who visits me once a week. It was her day to visit and she stayed with me and helped me to the bathroom and into and out of chairs. It was hard to sit down because I couldn’t make my body bend and I’d just slide off. But we got it under control. She had to help me drink and eat. I would grab the coffee cup handle and then could not make my hand let go. In the mean time I was so grateful for her assistance and that the Lord was taking care of me that I was also as high as a kite and proposing marriage to chairs and such. Today was the beginning of the work week here (Abu Dhabi) and I did alright. But the lecture kept going off on these tangents making it hard for my class to take useful notes. It was because my mental state was still flying around the cosmos. What is going on here? OK, I have TM in my upper spine; but what is this mental derangement stuff? I sure wish the drs could find out what is wrong with me. Dalton From: Barbara Alma balmat...@aol.com Date: Sun, 7 Nov 2010 00:48:22 -0400 (EDT) To: tmic-list@eskimo.com Subject: [TMIC] hello out there Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 6 Nov 2010 21:48:30 -0700 Well, I guess since nobody has written in that all must be going well for everyone. It's very good to hear this. I do think that it is a good idea to keep this list going though in case there are any newbies who may need us and don't think there is anyone here to listen to them. If a couple of days pass without any messages, let's send in a message or two. Hugs, Barbara A in Auburn CA
[TMIC] Lesions
I have a question for those of you who were originally diagnosed with TM and having lesions from T7-T10 on one side of your spine. 1. Did you lose feeling just on one side from your waist down? 2. After a couple years or more, did you start having trouble with your opposite leg? (Tingling and tightness) I would appreciate hearing back from you. Carol from Addison, IL
RE: [TMIC] Tired
Hi Dennis, First of all I am so sorry that you are in the position that you are in. Second of all, I would certainly look into moving. Having said that, if you have someone do some investigating, maybe they can find a more compatible home for you. Since you have access to a computer, you might also search on the state website and see if they have a grading system for nursing homes. Carol in Addison, IL soon to be moving back to Indiana. From: drabala...@gt.rr.com To: tmic-list@eskimo.com Date: Tue, 28 Sep 2010 16:08:33 -0500 Subject: [TMIC] Tired Hi group. I am feeling down today. I would normally not vent. But I am tired. I am an incomplete quad in a nursing home. Which I hate. the 6am-2pm shift is excellent; but 2pm-10pm is horrible. For the most part. They are not helpful at all. They seem to be bothered to even have anything to do with me. They are nice usually to other residents. I don't report it because even though they get written up. They get meaner and ruder. I really just want to give up. I'm not but it's just tempting. Can anyone help? What should I do, move? dennis tx
[TMIC] Iron Defensiency
Does anyone have iron deficiency as a result of the TM or the meds they are taking? Carol in Addison, IL
[TMIC] Magnesia Phosphorcia
magnesia phosphorica: So is this homeopathic wonder a cure all for all that ails you? I don't mean that to be sarcastic, but curious who has used it and for what ailments. I am going to Mayo Clinic Sept 13. For something that is not suppose to progress (TM), something sure has progressed to my originally unaffected leg. Neurologist at Northwestern Memorial in Chicago is baffled, and still says it is not MS. It's been 5 years since the onset of my TM lesion from T7-T10. Carol in Addison, IL Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
Re: [TMIC] knee pain
My knees hurt and one hip. I think it is the way I lean when I walk and strain from sitting to standing position. Carol in Culver, IN - Original Message - From: Krissy Z To: TM List ; TMA-New-England Sent: Friday, June 13, 2008 9:23 PM Subject: [TMIC] knee pain I went to the dr today because my right knee has been bothering me, when I sit for a bit or wake up from sleep its getting harder and harder to walk. Its not the knee cap but to the side a bit . (inner) She took an xray, but havent heard back anything yet, and she said i'll have an mri if nothing on xray. She told me to take ibuprofen on a reg basis (up to 800 mg) but it still hurts painfully to get up and walk until I walk it out a bit. I have applied heat but it doesnt seem to last long. It's on my right leg too, which is the one most affected by the TM. Any ideas what I could do to alleviate some of the pain? Has anyone developed anything like this after getting tm? I never had any pain of any sort with this tm... ~Krissy~ We are all in this together, by ourselves. - Lily Tomlin ~I'm In pretty Good Shape For the Shape I am in~
Re: [TMIC] age related tm
Very interesting. Carol - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, June 09, 2008 12:00 PM Subject: Re: [TMIC] age related tm Terry's butt went numb first, also... -- Get trade secrets for amazing burgers. Watch Cooking with Tyler Florence on AOL Food.
Re: [TMIC] June Birthdays
Happy Birthday to all! - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Saturday, May 31, 2008 11:40 PM Subject: [TMIC] June Birthdays Is it June already? Where did May go? Hope all of you first-of-summer kids have a great birthday! As always, please send any additions or corrections to tmic-list@eskimo.com 6-1 Akua ([EMAIL PROTECTED]) 6-2 Crystal ([EMAIL PROTECTED]) 6-5 Tobe Kanon ([EMAIL PROTECTED]) 6-11-42 Irene ([EMAIL PROTECTED]) 6/11/50 Marabeth ([EMAIL PROTECTED]) 6-11-51 Sharon Marsden ([EMAIL PROTECTED]) 6-17-46 Cheryl ([EMAIL PROTECTED]) 6-19 Tom in Delaware ([EMAIL PROTECTED] ) 6-19 Debbie Capen ([EMAIL PROTECTED]) 6-22 Ann Moran ([EMAIL PROTECTED]) 6-25 1943 Errol White ([EMAIL PROTECTED] ) 6-29-59 Pauline ([EMAIL PROTECTED]) 6/30/40 Bobby Jim ([EMAIL PROTECTED]) For those who remember them, there are two birthdays this month of fellow TMers who have passed on. Tom Carr's is June 2 and Dennis Galvin's is June 25. I don't know their family members or how to reach them, but if you do, it might be nice to send them a little note that we're remembering them and thinking of them. -- Get trade secrets for amazing burgers. Watch Cooking with Tyler Florence on AOL Food.
Re: [TMIC] Oldies
You go boy! - Original Message - From: [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Saturday, May 24, 2008 2:22 PM Subject: [TMIC] Oldies Hey people. I just talked to Norman Wright, a very old frined of mine from way back. I met Norm when I was a mere child of 15 when we went to New York to re-record Rama Lama Ding Dong for those of you who are children of the late 50's and early 60'd. Anyway, Dick Biondi who was at WHOT here in Youngstown wanted us to go to New York as he had contacted Alan Freed who was at WKBN here back then, and moved from Cleveland to NY. We went and did the song. While we were waiting for the pressing, Alan came and asked if we would back up a group becausethe studio band hadn't arrived yet, and he wanted to get the new record pressed. We went back into the studio, where I met Norman, and Corinthian ( Cripps ) Johnson. We cut a record called Whispering Bells, if any of you guys recall the Del Vikings. If you hear the song played, your gonna hear brushes at the beginning on the snare. That's me. Well, I asked Norm if they would consider doing a benefit to help with Doug's research. He said ok, but he'd have to check with his publicist to when they had an open date. Norm's gonna put the word pout to see if we can get more groups to join in. I know I can get Larry Chance from the Earles if I can find him. I have Biondi's email so, I'm gonna ask him to help. Keep your fingers crossed. -- Get trade secrets for amazing burgers. Watch Cooking with Tyler Florence on AOL Food.
[TMIC] OT-House
What was the medication that Amber took that caused her death? Carol in Culver, IN
Re: [TMIC] 19 year TM Anniversary
Dear Jim Without your bravery and your indulgence to persevere, I wonder where the rest of us would be. Thank you for ALL that you have given so unselfishly. With Much Gratefulness, Carol in Culver, IN - Original Message - From: Jim Lubin To: tmic-list@eskimo.com Sent: Saturday, May 17, 2008 5:15 PM Subject: [TMIC] 19 year TM Anniversary On May 17, 1989, I became paralyzed from the neck down and dependent on a ventilator to breathe due to Transverse Myelitis. I was 21. I woke up with a pain in my shoulder. Went to work and about 30 mins later the pain got very intense. I suddenly could not stand then stopped breathing. I later found out that my heart stopped and it took awhile for them to stabilize me to even transport me to the hospital a few blocks away. The doctors had no idea what had happened to me. initial thought were possibly a stroke, lyme disease, or Guillain-Barre Syndrome. I was in and out during that time, could not talk, only remember bits. After about 2 weeks I had a MRI and was given the diagnoses of Acute Transverse Myelitis. I was in ICU until July 31 then transfered to rehab. In rehab I was treated as a person with a spinal cord injury. I had physical therapy which consisted of giving me range of motion and practice driving my sip and puff operated wheelchair. In speech therapy and occupational therapy I learned morse code to access the computer. I practiced typing and played tetris and chess. In October, I was able to leave the hospital for the first time and went to see the Batman movie. I started going to movies about once a week. The nurses always tried to get the other patients to go out when I went because I was the only vent dependent high level quadriplegic and enjoyed going out. Others were paraplegics, having problems dealing with their condition. I was in rehab until January 31st. I've been paralyzed most of my life. Wow how time flies. Jim Lubin [EMAIL PROTECTED] http://makoa.org/jim disAbility Resources: http://www.makoa.org
[TMIC] Neurontin Pain
Hello Group, Last night I experienced an intense burning pain that I could not sleep through. Finally I got up around 1:00 to take a Darvocet and then around 2:00 a Flexeril. The pain finally subsided and I slept until 11:00 a.m. Now around 3:00p.m. this afternoon the pain is starting in again. It comes and goes like labor pains but hurts when it's here. I called my neuro and he said this is a classic symptom of pain coming from the spinal cord. He is calling in an order to my phrarmacy for a low dose of Neurontin and said for me to take it as needed, not more than 3 per day. I have had this pain before, but it never kept me from sleeping. Last week I had IV solumedrol on Mon, Tues Wed. Got there Thurs and due to my heart rate being 46, it was cancelled. Friday I was not feeling well, so missed that dose also. My neuro also thinks that I have MS, even though no new lesions are showing. Almost three years ago, Dr. Kerr said I did not have MS. I know things change, but I have no new lesions. Do I request to be seen by another neuro or go with the flow and start with one of the MS shots that my neuro is suggesting? I think he suggested Avonex. Carol in Culver, IN
Re: [TMIC] Neurontin Pai
Hi Grace, Thanks for writing. I guess only because I have gotten worse, which is not consistent with TM; the new pain that I have, less balanced when walking. I have not had a spinal tap for 2 years. I don't know what it said although I have the report, I just don't know what all the jargon means. Dr. Kerr mentioned that my spinal fluid did not confirm TM. My local neuro said that there must be a lesion that the MRI is not picking up. Got me. I have been on the phone this afternoon trying to find a neuro in Indianapolis for the 3rd opinion. Carol - Original Message - From: Grace M. To: Carol Cc: tmic-list@eskimo.com Sent: Monday, May 12, 2008 4:22 PM Subject: Re: [TMIC] Neurontin Pai Hi Carol, What is your neuro actually basing the diagnosis of MS on? Has he done a lumbar puncture and do you have oligoclonal bands in your fluid? Just curious. Gracie
Re: [TMIC] Neurontin Pa
Gracie, Thanks for the info. I started working with my insurance today for a another opinion. I appreciate all the response that are coming in. Thank you all so very much. Carol in Culver, IN - Original Message - From: Grace M. To: Carol Cc: tmic-list@eskimo.com Sent: Monday, May 12, 2008 5:14 PM Subject: Re: [TMIC] Neurontin Pa Hi again Carol, You had mentioned possibly going on Avonex, but I was wondering if your neuro would consider Copaxone? People seem to tolerate it a lot better with less side effects. Just a thought. GracieBut, do get a second opinion before starting any MS meds.
Re: [TMIC] Neurontin Pai
Hi Alton, Do you think this could happen and affect only one side of the body? I think this was considered at my initial onset 3 years ago and the docs decided against it. Carol in Culver, IN - Original Message - From: Alton Ryder To: Carol E ; TM List Sent: Monday, May 12, 2008 5:50 PM Subject: Re: [TMIC] Neurontin Pai There is another condition that wipes the spinal cord without any evidence of inflammation - a spinal stroke. I believe this happened to me - a small infarction in a branch artery. A piece of tissue the size of a rice grain in a sensory tract died and polluted the neighborhood; in twenty minutes I was paralyzed from the waist down. Took months to recover motor control, and spasticity remains today. Alton Ryder, nailed in 1997 On May 12, 2008, at 4:4442 PM, Carol wrote: Dr. Kerr mentioned that my spinal fluid did not confirm TM
Re: [TMIC] Word Up...
Dearest Jude, Do you feel confident that they have a very good wound care staff on hand? I worked for a wound care company in the burbs of Chicago and know enough to tell you that wound care is a specialty of it's own. Many nursing homes and rehab centers have their own wound care staff, but I have to think that they may not be the best option for something that is CLEARLY not healing. I have to get ready for work now, but if you want me to find a wound care center close to you, perhaps your facility will make arrangements to transport you there 2 or 3 times a week. I also know that you either need to be eating a well balanced meal or be taking an IV with your supplements in it. Nutrition is key in getting a non-healing wound healed. Another key component to healing is having adequate blood flow in the affected limb. Do they tell you if you have a good pulse? If not, don't be afraid to ask them if you have good blood flow in that limb. I started working for a wound care company because I saw what great things they did to save limbs when other physicians were ready to amputate. I believe very strongly in reputable wound care centers. God Bless Jude, Carol in Culver, IN - Original Message - From: [EMAIL PROTECTED] To: TMIC-LIST@eskimo.com Sent: Tuesday, May 06, 2008 1:09 PM Subject: [TMIC] Word Up... Hello Friends, It's me, with a short update on my condition, for those of you who care. The pressure sore on my leg is getting worse by the hour. The necrotic tissue is never-ending and the root has burrowed way down into the bone. The antibiotics are not working and are breaking down my system little by little. I cannot eat at all and am plagued by constant d. And can no longer spell either...a bothersome side effect. I am back online at AOL so if you send personal email, please use the old address. My notes will be short and wirh only enough content to let you know what is going on. My love to you all... Jude -- Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food.
[TMIC] Steriods AGAIN!
Hi all, I know some of you do not believe in going the steroid route, but when that's what your neurologist recommends and you are getting worse, what is one suppose to do? Anyway, I will be receiving out-patient solumedrol next week, Mon-Fri. I hate steroids because they not only make my blood sugar out of control, they also make me crazy. I remember 2 years ago when I had this treatment, by day 3 all I did was cry. I was never so glad to get something out of my system as these steroids. My local neuro says either I am having a TM flair-up or I have MS and it just has not shown itself yet. Last week, I had a MRI of my brain and thoracic spine, with and without contrast and there was no change from 2 years ago, which is great news, but then WHY is my good leg getting worse It feels like it is shot full of Novocain from the knee down. When I met with Dr. Kerr 2 years ago, he said I definitely do not have MS and didn't think I would have any flair ups of TM. I am in a state of confusion. If I have MS like my local neuro thinks, don't you think it would be evident in my new MRI's? Wish me luck. Carol in Culver, IN
Re: [TMIC] May Birthdays
Happy Birthday to all the May birthday people. Celebrate your life. Carol in Culver, IN - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, May 02, 2008 12:17 AM Subject: [TMIC] May Birthdays Happy Birthday to the May babies! Please send any additions or corrections to [EMAIL PROTECTED] 5/5/ Linda Garrett ([EMAIL PROTECTED]) 5-9- Lynn - Rhode Island ([EMAIL PROTECTED]) 5-11- Lynn ([EMAIL PROTECTED]) 5-12- [EMAIL PROTECTED] 5-12- Mary Woods ([EMAIL PROTECTED]) 5- 19 Maureen Wroblewski Hallagan ([EMAIL PROTECTED]) 5- 26- Maria in Tonawanda ([EMAIL PROTECTED]) 5/27/ Jim ([EMAIL PROTECTED]) 5/31/ Wendy Wood ([EMAIL PROTECTED]) -- Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food.
Re: [TMIC] Re: tmic-digest Digest V2008 #190
I also wrote to Oprah over a year ago and got no response. I would also be available to go if it comes to fruition. Carol in Culver, IN - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, April 25, 2008 6:51 AM Subject: [TMIC] Re: tmic-digest Digest V2008 #190 Hey, If I can be of any assistance I live 35 miles from Chicago and would love to go to the Oprah show. I too wrote to Oprah and never got a response from her except a generic email asking me if I want to join her join Oprah's favorite things. Those keep on coming. I guess they put you on Oprah's advertising when you send in a question. Anyway, I would love to go to the show on TM or stem cell. I am one of the walking wounded. I do pretty well with no assistance. I do stumble sometimes but I can walk and count my Blessings everyday. My neurologist is very wonderful and he is still connected to Northwestern Hospital in Chicago. I don't know if he would go but I will ask him when I know what the date is. I am surprised that she would tackle something like TM at election time. Take Care and keep us posted. Patti -- Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.
Re: [TMIC] Questions
Hi Jeanne, I have placed my answers below in red. Carol in Culver, IN - Original Message - From: jrushton To: tmic Sent: Saturday, April 19, 2008 1:31 PM Subject: [TMIC] Questions Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? YES 2) Did you ever suffer from shingles? NO 3) Did you have a flare-up of shingles prior to your being stricken with TM? N/A These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
Re: [TMIC] requesting advice from you experienced souls
Yes, how true this is. I didn't lift my foot high enough one day, caught my toes on the carpet, and BAM! broke my foot. I had just gotten of a week of outpatient IV prednisone a couple weeks before this incident. BUT, if you have decreased movement due to swelling in your spine, this might be the best way to go. I just know I don't want to be on it as a means for continuous treatment. It also made me CRAZY! Carol in Culver, IN - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Friday, March 21, 2008 6:25 PM Subject: Re: [TMIC] requesting advice from you experienced souls My neuro doesn't want me on prednisone because of osteoperosis. It is not good for the bones. -- Create a Home Theater Like the Pros. Watch the video on AOL Home.
Re: [TMIC] Angry here.
Hi Grace, Sorry to hear that people have nothing better to do than chastise someone for writing in all caps. Even though I personally find it a little harder to read, I do not delete those messages. I just take more time in reading them. Everyone's messages are important to me. Carol in Culver, IN - Original Message - From: Grace M. To: tmic-list@eskimo.com Sent: Friday, January 04, 2008 12:08 PM Subject: [TMIC] Angry here. Hi Guys, You know, there are several of us who need to write in caps, due to severe vision problems. Though I don't use caps, I do use large font. I have to, in order to see what I am writing. Recently, one of the long term members of the TMIC, who is also a personal friend of mine, received an extremely obnoxious email regarding this. (Complete with *language*.) You know, this little group is for the most part---wonderful. It was the very first site that I discovered at the time of my NMO diagnosis, and I have been made to feel at home here. It's like having a virtual *family*. This unnecessary haranguing, of a long standing member, has left a very bad taste in my mouth. Think of it this way: In the big scheme of things, say, ten years from now, is it really going to *matter* if someone had to use caps in order to communicate? I know that I, for one, will certainly not be thinking about something as trivial as that whenever I prepare to meet my Maker. Let's put it to rest, okaye? Grace
Re: [TMIC] leg stiffness
I have the same feeling. Carol in Culver - Original Message - From: [EMAIL PROTECTED] To: sal r ; tm Sent: Wednesday, December 26, 2007 10:36 PM Subject: Re: [TMIC] leg stiffness Definitely yes, I have leg stiffness. It is like wearing a cast (although I've never worn a cast so I don't know for sure!) and feel like they are 100 pounds each. Gary in Michigan - Original Message - From: sal r To: tm Sent: Wednesday, December 26, 2007 1:57 PM Subject: [TMIC] leg stiffness anyone else having this problem? Never miss a thing. Make Yahoo your homepage.
Re: [TMIC] DR. ANDREW WEIL ON TRANSVERSE MYELITIS
Does anyone take the ginger or Turmeric Force capsules the Dr. Weil speaks of in this article? Carol in Culver, IN - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, November 26, 2007 2:55 PM Subject: [TMIC] DR. ANDREW WEIL ON TRANSVERSE MYELITIS Click here: Overcoming a Nerve Disorder? -- Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.
Fw: [TMIC] Do we still have TM?
I think this is a GREAT explanation. Thank you, Debbie Carol in Culver, IN - Original Message - From: Deborah Nord Capen To: Carol Sent: Saturday, November 03, 2007 6:22 PM Subject: Re: [TMIC] Do we still have TM? Carol, My-el-itis is an inflammation. You can think of other illnesses, such as tonsil-itis, appendic-itis, to name a few. It is an inflammation, that causes a person to become severely ill, with death as a possibility if the inflammation is not corrected. A person with appendicitis has surgery to remove the inflamed appendix. A person with chronic tonsillitis has their tonsils removed to get rid of the tonsils that are causing chronic inflammation. Obviously, since myelin is surrounding our spinal cord, we can not have it removed to get rid of the inflammation. The doctors either use medical treatment, such as IV steroids or plasmaphoresis, or other therapies, to reduce the inflammation before it does too much damage to the myelin sheath. Once the inflammation has gone, we are left with the residual damages that the itis caused to our spinal cord. We now have myelopathy. There are varying degrees of damage, such as permanent paralysis, mild paraplegia, sensory deficits, motor deficits, bowel/bladder dysfunction, and in hundreds of different ways, in thousands of people. So, technically, we no longer have transverse myelitis - we have the residual damage from an attack of transverse myelitis. In other words, you can say you have transverse myelopathy. I tell people that I am living with damage caused by an attack on my spinal cord called transverse myelitis. Hope that helps. Take care, Debbie - Original Message - From: Carol To: tmic-list@eskimo.com Sent: Saturday, November 03, 2007 2:14 PM Subject: [TMIC] Do we still have TM? I know this question has been put out here before, but I can't find it. So I ask again, do we still have TM or did it come, destroy and leave and we are left with the aftermath? Your comments please Carol in Culver, IN
[TMIC] Do we still have TM?
I know this question has been put out here before, but I can't find it. So I ask again, do we still have TM or did it come, destroy and leave and we are left with the aftermath? Your comments please Carol in Culver, IN
Re: [TMIC] IMPORTANT REMINDER
Debbie, Very well written. I agree! Carol in Culver, IN - Original Message - From: Deborah Nord Capen To: tmic-list@eskimo.com ; Jim Lubin Sent: Thursday, November 01, 2007 11:36 AM Subject: Re: [TMIC] IMPORTANT REMINDER Jim has posted a very important message to us all. I have been subscribed to the tmic list for almost 11 years, and I can attest to the fact that if you post to the list, your information will be there for the world to share. I have used most search engines and typed in my own name, and now there are hundreds of hits with information I have posted on the internet. Your privacy is compromised every time you surf the internet, so if you are concerned about that, you should not be online at all. This can be a bad thing for those who value their privacy; however, we have all subscribed to the list because we needed information for learning to cope with our daily struggles with transverse myelitis after it has decided to permanently reside with us. If others, such as Jim Lubin, had not posted their requests for information about their same issues, I would never have found this list, and I would never have found out about the TMA. If we were all concerned about our privacy and did not reach out in search of help, there would still be no information available on the internet. If your privacy concerns you, please do not post on the list. If you want help, please DO post on the list. My mailbox has not been overwhelmed with junk mail because of the tmic list. I have tracers that can detect where the junk is coming from. None of the information posted on the list is used to send you more junk. I also have never received any viruses due to the list. Now, there are certain people on the list who have had their computers infected, and if they have added my name to their address book, I have received infected emails from them, but they did not come directly from the list. I also have very good anti-virus protection, so all of the infected mail has been caught before causing any harm. There are heavy filters placed on the server that processes the tmic list messages. If any infected emails are sent to the server, they are cleaned out before being forwarded to those who subscribe, so you should not be concerned about infections either. Sorry to post such a long message, but I feel that Jim's email warrants more than one small post. Please keep posting your messages. You are helping more than one person out there who has questions and concerns. Take care, Debbie - Original Message - From: Jim Lubin To: tmic-list@eskimo.com Sent: Tuesday, October 30, 2007 5:22 PM Subject: [TMIC] IMPORTANT REMINDER I received an email from someone who wrote I am distressed to see that your archives are public and anyone can search my name and come up with some very private medical information. Do not post personal information that you don't want the world knowing. The message archive is searchable by anyone with Internet access. The archive is at http://www.mail-archive.com/tmic-list@eskimo.com/ If you want a message deleted send me the page url example: http://www.mail-archive.com/tmic-list@eskimo.com/msg06410.html and I will try to get it deleted. The only alternative option is to remove the archive completely. Keep in mind that many people found help by search for their own symptoms and finding a message someone else had posted. That was the reason the archive has always been publicly searchable. Jim Lubin [EMAIL PROTECTED] http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] GETTING A FLU SHOT..? THIS STUFF PARALYZED ME...!
My daughter is a nurse and her husband is an MD and they have chosen not to get their 2 children, ages 4 mos and 2 1/2 yrs, the flu shot. They have received all their other shots. Carol in Culver, IN - Original Message - From: Trudy To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Thursday, October 18, 2007 4:49 PM Subject: RE: [TMIC] GETTING A FLU SHOT..? THIS STUFF PARALYZED ME...! This is scary! do you know where we can find the study or more info on this. My daughter just had her first child and she is debating about all the shots he is required to have. Thanks for the update Trudy -- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, October 18, 2007 4:03 PM To: tmic-list@eskimo.com Subject: [TMIC] GETTING A FLU SHOT..? THIS STUFF PARALYZED ME...! Autism or flu.choose your poison If you haven't yet heard of Thimerosal, hang onto your mittens.it's a word likely to creep into more and more health headlines in the coming months and years. Thimerosal is used as a preservative in vaccines-including but not limited to most flu vaccines. And although most of the preservatives used in the products we put into our bodies are unhealthy -- to simply call Thimerosal unhealthy would be an egregious understatement. You see, Thimerosal is a little less than 50 percent mercury. The same mercury that the Department of Defense classifies as a hazardous material that could cause death if swallowed, inhaled or absorbed through the skin. Mercury poisoning has been linked to cardiovascular disease, autism, seizures, mental retardation, dyslexia and several other neurological disorders. And it's been banned as a vaccine preservative in several Asian and European countries for over 20 years. So, why am I tell you all of this? Because a federally funded study recently came to the conclusion that Thimerosal does not raise the risk of neurological problems in children. An interesting conclusion given that some vaccines (among the 12 to 15 commonly administered to children) contain as much as 12.5 micro grams of mercury per dose. That's more than 100 times the EPA's upper safety limit for mercury when administered to infants. It's also interesting to note that incidence of autism was not included in this study. A separate study is underway, but results are not expected before next year. As for adults like us, sure the concentrations of mercury compared to body weight is much lower, but bear in mind that studies have shown that injected mercury tends to accumulate in the brain. Plus a 1977 study, done in Russia showed that adults exposed to the form of mercury found in Thimerosal lead to brain damage years after exposure. So, you may want to think twice about playing it safe and getting that flu shot. And at the very least, make sure the version you're getting does not contain Thimerosal. -- See what's new at AOL.com and Make AOL Your Homepage.
[TMIC] Responses to Flu Shot Questions
If you do not have Excel, please let me know and I will send another way. Carol Responses to Flu Shot Question.xls Description: MS-Excel spreadsheet
Re: [TMIC] parker video
Bob, You are so right. This is certainly worthy of being aired on national TV. Carol in Culver, IN - Original Message - From: robert diehl To: tmic-list@eskimo.com Sent: Sunday, October 07, 2007 4:29 PM Subject: [TMIC] parker video http://vids.myspace.com/index.cfm?fuseaction=vids..individualvideoid=19562912 wish one of the national talk shows would aire this video very human story
[TMIC] Flu Shot
Would like to hear from one and all regarding the controversy of whether to get a flu shot or not. Interested in knowing how many people plan on getting a flu shot this season. I know this is very controversial within the group. Neither one of my neurologist have told me NOT to get one, including Dr. Kerr. They both have said that it was safe. My primary care physician suggests I get it since I have heart disease and diabetes. Carol in Culver, IN
Re: [TMIC] re: TM Oprah
Yes, I think it would be good for MANY people to write to Oprah. I wrote probably about 1 year ago and never heard anything back. I was never notified by the group if anyone else wrote or not. Carol in Culver, IN - Original Message - From: Kevin Wolfthal [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Saturday, September 22, 2007 6:40 PM Subject: [TMIC] re: TM Oprah Naomi, Thank you! I also wrote to Cody Unser. She and her Mom both emailed me back. Cody is very interested in doing this. I know this has been tried before, but it can't hurt to try again. I think we need to bombard Oprah with requests. Take care, Kevin ps: Here's the Oprah link to write to: http://www.oprah.com/email/reach/email_showideas.jhtml
Re: [TMIC] Surgery on Monday
Natalie, You will be in my prayers. Good luck with your surgery and I'm sure the outcome will be an improvement from what you are currently experiencing. Carol from Culver, IN - Original Message - From: natalie mizenko To: Transverse Myellitis Sent: Saturday, August 18, 2007 5:02 PM Subject: [TMIC] Surgery on Monday Hello to all: I went yesterday to the hospital to get a picc line put in me again as I have no veins left in my arms and hands at all. I wish they would use my legs, but they seem to not want to. A trained nurse who resently started last week doing these, took her over an hour to get it threaded thru. My arm was exhausted from hanging over the gurny (sp?). Next time, I will not allow a nurse to do it. Drs. are much faster and easier on the body. I will undergo a major surgery on Monday to solve my severe incontinence. My urologist will take part of my bowel and move it over and attached my urethers in this pocket he has created and I will cath from the hole; when not cathing will seal a bandaid over it. It is not the easier surgery where you wear a bag - an ostomy I think it's called is the easier one. I don't look forward to like my 10th surgery or more for one reason or another, but a much better life for me should be in the future after a 4 to 6 month recovery. So, I will miss you all say a prayer for me that all will go smoothly. If anyone else has had this done, please email and let me know if it's ok? Take care to all, Natalie M. -- Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more.
[TMIC] Vitamin B6
Has anyone taken vitamin B6 and noticed any difference in their numbness tingling or with anything? Carol from Culver, IN
Re: [TMIC] TMIC emails
I only received one message on the 12th and two on the 13th one of which was the Digest. Carol in Culver, IN - Original Message - From: Larry Throne To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] Sent: Friday, April 13, 2007 11:28 PM Subject: [TMIC] TMIC emails Bob, Is it just me or is the email for the tmic group shut down or something? I sent an email about a scholarship yesterday and it never came through. Are you getting any? -- Need a break? Find your escape route with Live Search Maps.
[TMIC] Diabetes Statin Drug Questionnaire
Hello all, I need your help. I am collecting some information on my own and would like everyone to respond who has diabetes and/or who were taking statin drugs prior to the onset of TM. While on vacation last week, I heard on the Tampa, FL news of a man who reportedly had diabetes which affected his spine and one day he woke up and could not moved one side of his body. The news was reporting that someone stole his electric cart out of his truck, but my ears perked up with his illness. Also while on vacation I read a book called: Statin Drugs Side Effects and the Misguided War on Cholesterol. Very interesting information, so interesting that I am now cutting my Lipitor in half. To complete this questionnaire, please click on forward and then you will be able to respond to each question or statement. I will post my findings on the TMIC List. My goal is to give everyone 30 days to respond and I will send out a reminder in 15 days. I do not need or want your personal names as I do not want anyone to think that I will use this information for anything other than my own personal use. Depending on the information I collect, I may share it with my physician. 1. Date diagnosed with TM. 2. Date diagnosed with diabetes. 3. Do you have Type I or Type II diabetes? 4. What medication do you take for diabetes? 5. Date began taking statin drugs or Zetia. (Lipitor, Mevacor, Zocor. Pravachol, Crestor, Vytorin, Lescol and Baycol which has been taken off the market.) 6. Which drug are you taking or did you take? 7. Have you ever had muscle pain, cramping or weakness since you began taking any of these statin drugs? 8. When did the muscle pain, cramping or weakness begin in correlation to the onset of TM? Carol in Culver, IN TM, T8-T10 June 2005
Re: [TMIC] numb hand
Sally, I also have some numbness and tingling at night time. I have always chalked it up to the rotator cuff tear that I have on each shoulder. - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Sunday, February 25, 2007 1:31 PM Subject: [TMIC] numb hand Has anyone woken up at night with a numb hand? Twice in the last week, I've woken up during the night with my left hand numb. The first time I just chalked it off as being b/c I'd fallen asleep laying on my back on an ice pack for a couple of hours. But when it happened again last night, I got a little more concerned. Part of what makes me more concerned is that for the last couple of weeks, my upper spine has been feeling a bit weird. My TM lesion is T6 - T8, but now I'm starting to worry about something higher in my back. Now that I think about it, when I was jumping (lightly) on the little trampoline at PT, I felt this funny feeling in my upper spine (like maybe it was sort of jamming together). Then at water exercise, I've started participating in the jumping jacks that sort of does the same thing to my upper spine. Of course, it's not like jumping on the ground b/c the water cushions the movement, but maybe my body isn't ready for this. Any experiences with these kinds of things? Sally
[TMIC] M.I.M.E/Anodyne Therapy
Would the nursing and medical folks on the list please let me know what you think about M.I.M.E or Anodyne Therapy. And are they the same thing? Is M.I.M.E the actual therapy while Anodyne is a patented company name? I am including a link regarding the information I was reading. http://www.nfb.org/Images/nfb/Publications/vod/vodwin0512.htm Has anyone on the list used this therapy with success in reducing pain and increasing blood flow, particularly to the legs? Your feedback will be very much appreciated Carol in Culver, IN Cold and snowing!
[TMIC] Correction: M.I.R.E./Andodyne Therapy
My original message I spelled it wrong. It is MIRE not MIME. Thank you to those who have written me. Would the nursing and medical folks on the list please let me know what you think about M.I.R.E or Anodyne Therapy. And are they the same thing? Is M.I.R.E the actual therapy while Anodyne is a patented company name? I am including a link regarding the information I was reading. http://www.nfb.org/Images/nfb/Publications/vod/vodwin0512.htm Has anyone on the list used this therapy with success in reducing pain and increasing blood flow, particularly to the legs? Your feedback will be very much appreciated Carol in Culver, IN Cold and snowing!
Re: [TMIC] Fwd: FW: Drug Recall Information OT
AOL EmailAccording to Snopes.com this is true, but outdated. Please read the attached to become better informed and determine for yourself it this is an outdated alert or not. http://www.snopes.com/medical/drugs/ppa.asp Carol in Culver - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; TMIC-LIST@eskimo.com Sent: Wednesday, January 31, 2007 3:24 AM Subject: [TMIC] Fwd: FW: Drug Recall Information OT Off Topic, but important. Pass it on to your family and friends...sounds kind of serious.
Re: [TMIC] Mom
Gunny, So sorry to hear about your mother. I hope her suffering will be over soon. Carol in Culver - Original Message - From: Gunny [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Sunday, January 21, 2007 11:10 PM Subject: [TMIC] Mom Hey People; For those of you that know me, you may remember the story of when my Mom feel and I had to pick her up. Well, I can't pick her up now. Mom's been in a Nursing Home since last April. She had a Fistula put in her arm for Dyalisis but it kept clotting so she had surgery to repair that last Thursady. Guess what, more clotong so she decided to quit. She now has at the most maybe three days let. She went from talking yesterday to not responding today. Eurmic poison is taking over. It's for the nest. This lady has endured a lot of shit in her life so now it's alomst over. I'm gonna miss her. I'll te ya know when she's gone. Oh. one thing she did ask me to do was to spread some of her ashes over 586 N. Howard St., Akron Ohio. That's the house she and I were born in, so, that's what I'm gonna do. I'll bark at you all in a couple days. Gunny PeoplePC Online A better way to Internet http://www.peoplepc.com
Re: [TMIC] Stem cells
Yahoo!!! That is fantastic news. Thanks for spreading the good word, Gunny. Carol in Culver, IN - Original Message - From: Gunny [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Thursday, January 11, 2007 3:03 PM Subject: [TMIC] Stem cells I don't know how many of you have heard but, the stem cells needed for our particular condition have been found in embryonic fluid. No matter what happens about the embryonic cells, the one found in the fluid can be used. Were well on our way. Gunny PeoplePC Online A better way to Internet http://www.peoplepc.com
Re: [TMIC] It's a great time to give!
It is a great time to give! I just made my donation. Probably the only one from Indiana. And as they say, better late than NEVER. Jude recently sent out a greeting and included in her greeting was a link to Grandma Faith's website. At the very bottom of the webpage was a quite profound statement that I am adopting as my tagline. It really hits home when you think about giving, whether it be monetarily or your time. But for Jim and all TM victims, try to find a minimum of $10 to be donated through the Yahoo! link listed below. If we give today, maybe there will be a cure for those who will follow us in the years to come. Hurry, I believe the deadline is December 31st. Merry Christmas to you all. Carol What we do for ourselves alone dies with us. What we do for others, and the world, remains and is immortal. - Original Message - From: Jim Lubin To: TMIC-LIST@eskimo.com Sent: Sunday, December 10, 2006 9:45 PM Subject: Re: [TMIC] It's a great time to give! Hey everyone, my charity badge is currently #1 with only 7 donations! http://promotions.yahoo.com/giving/topten.php Even if you can only donate $10 (the minimum amount) it will add up. If my charity badge receives the greatest number of donations from unique, individual donors, regardless of the amount, Yahoo will match the total amount donated! If you are able to give more remember the donation is tax-deductible. To designate your donation for a specific fund or purpose, please enter a description of how you'd like your donation to be used in the provided box on the form. Thank you Jim At 07:02 PM 12/8/2006, Jim Lubin wrote: Now is a great time to give to the Transverse Myelitis Association. I became a ventilator dependent quadriplegic, paralyzed from the neck down, due to Transverse Myelitis, a rare neurological disorder that affects the central nervous system. I am trying to help raise funds for education and research. To support your efforts even further, between now and December 31, 2006, Yahoo! will track how many unique, individual donors contribute to the charity featured in each charity badge. Yahoo! will give a matching gift of up to $50,000 to the charity promoted by the top-performing Charity Badge (that is, the badge that receives the greatest number of donations from unique, individual donors, regardless of the amount). You must use this link to make your donation through this Charity Badge link: Transverse Myelitis Association Donate: https://www.networkforgood.org/donate/MakeDonation2.aspx?ORGID2=911780467PcaItemId=135 I want to personally thank you in advance for your donation! Jim Lubin Jim Lubin [EMAIL PROTECTED] http://makoa.org/jim disAbility Resources: http://www.makoa.org Jim Lubin [EMAIL PROTECTED] http://makoa.org/jim disAbility Resources: http://www.makoa.org
[TMIC] Thanks for all the replies
Well at least my question sparked some responses. As I figured, everyone if busy preparing for the BIG day. I hope you ALL have a very Merry Christmas and a Happy New Years too. Carol in Culver, IN Where it has been raining for nearly 48 hours and 50 degrees today. I'm dreaming of a muddy Christmas! Ho! Ho! Ho!
[TMIC] Where is everyone?
Is everyone just busy getting ready for Christmas or is the list not working?
Re: [TMIC] TM Question
Cody, How awful. Sounds like you had a really bad experience, but sure glad you and your wife are ok and that there are good people who ran to your assistance. I'm am sure the therapy will work wonders. I just finished 8 weeks of aquatic therapy. I thought I was as good as I was going to get. Much to my amazement, the aquatic therapy helped me even more. Carol in Culver, IN - Original Message - From: Cody Kidwell To: [EMAIL PROTECTED] ; TMIC ; Sally Wilkinson Sent: Wednesday, December 06, 2006 10:56 PM Subject: Re: [TMIC] TM Question Sally and DebbieWell the Lymphonema Clinic trip was bad. First of all I tipped my wheel chair over backwards going down a ramp into the crosswalk. I ended up on my back in the middle of the street. People came running to me form everywhere. When they lifted me up there were cars parked in the street with the doors standing open where they left them coming to my rescue. No damage to me or my wheelchair. My wife fell trying to catch me and scraped her knee a little. I was pleasantly surprised by the assistance offered by all of the strangers passing by. Once in the clinic I found out I will need to go to therapy three times a week for four weeks. They will massage and wrap my legs to reduce the swellling. Once the swelling is down they will put the support hose on them. I will probably have to wear them the rest of my life. I will be able to stop taking the Lasix and the coumadin. Then I went to the scales and found out I had gained a bunch of weight. When it rains it pours. I am now on Effexor and Lyrica as I try to get completely off the Lyrica. Pain level has increased some. Will keep you posted on the progress...Cody in Austin - Original Message - From: Sally Wilkinson To: 'Cody Kidwell' Sent: Monday, December 04, 2006 3:53 AM Subject: RE: [TMIC] TM Question Hi my husband had to come off Lyrica as his whole body became swollen including his chest which in turn caused him to have breathing difficulties! He got off Lyrica ASAP. He then found his legs jumped like mad when he went to bed so he started just taking 75mils at night, which did not cause any side effects but did help stop the legs jumping! He is now off it completely as he is awaiting a spinal implant and was asked to take as little as possible drug wise as he has now been taught different methods to deal with his pain. Hope this helps. Regards Sally in the UK -Original Message- From: Cody Kidwell [mailto:[EMAIL PROTECTED] Sent: 01 December 2006 22:43 To: TMIC; [EMAIL PROTECTED] Subject: Re: [TMIC] TM Question Debbie Iam going to a Lymphnema Clinic on Tuesday for the swelling. I am trying to get off the Lyrica and back on hte Effexor. I did better witht he Effexor. I think the Lyrica is affecting my breathing as well. Have you noticed any breating problems?Cody - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Thursday, November 30, 2006 10:27 PM Subject: Re: [TMIC] TM Question In a message dated 11/27/2006 9:13:43 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Todd and Rogette.I have had a lot of leg swelling since I started the Lyrica. I was taking 150mg 2XD and I am now up to 300mg 2XD. It still does not completely control the pain. Today I asked my neurologist about switching back to the Effexor. He agreed to switch me back. I had taken Effexor before after Lenora from the TMIC list said it had helped her. I switched to the Lyrica when it first came out hoping it would be the answer. I think all in all the Effexor worked better. I would be interested in hearing about others experience with Lyrica and EffexorCody in Austin - Original Message - From: Todd Tarno To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, November 27, 2006 4:03 PM Subject: Re: [TMIC] TM Question Yes this is part of TM. I use Lyrica twice a day and Nortriptyline once at night time. It doesn't stop it completely, but it does help a lot. I never got to go to a pain clinic where they could really know what medications to give me. That would be a great place to start. Todd in Corpus Christi, TX [EMAIL PROTECTED] wrote: I have had TM for six months. I have it from the waist down and was initially paralyed from the waist down. I am now walking on a walker and semi on a heme cane. However, I get these strange sensations from the nerves in my legs and when I am laying down a burning sensation in my thighs that really hurts. Have any of you experienced this and is this medication for it? Hi Cody, I also have had extreme leg swelling with Lyrica. I was on Nuerontin initially and then switched to Lyrica
[TMIC] December birthdays
Happy Birthday to you all. Hope your birthday will be a blast! Carol 12-2-74 Meghan ([EMAIL PROTECTED]) 12/2/93 Ashlee Black ([EMAIL PROTECTED]) 12-3 - 53 Wim from Holland ([EMAIL PROTECTED]) 12- 4-34 Jan Burgess ([EMAIL PROTECTED]) 12-8-62 Lori Malloy ([EMAIL PROTECTED]) 12-10-59 Shirley from UK ([EMAIL PROTECTED]) 12-10-77 Lauren in MO ([EMAIL PROTECTED]) 12-11-47 Donna Hodson ([EMAIL PROTECTED] ) 12-15-34 Alton [EMAIL PROTECTED] 12-15-70 CarolAnn B.L. from South Carolina, USA ([EMAIL PROTECTED]) 12-16-60 Rachael ([EMAIL PROTECTED]) 12-18-57 Rod Jenke ([EMAIL PROTECTED]) 12/23/49 Roger Pratt ([EMAIL PROTECTED] ) 12-25 Gilly ([EMAIL PROTECTED])
[TMIC] Testing 1-2-3
Have not received any messages for 2 days. Is the list working?
[TMIC] Looking for a Support Group
Hi Everyone, Just wondering if anyone knows of a support group in the Indianapolis, IN, Fort Wayne, IN or Chicagoland area. Or perhaps southern Michigan. If you know of something, please let me know. Hope you all had a wonderful Thanksgiving. Carol in Culver, IN
Re: [TMIC] A VERY HAPPY THANKSGIVING TO ONE AND ALL
To Everyone, What Bob has written is so very true. The information that everyone has shared has been so helpful and the support is priceless. I am sorry to have acquired TM in order to meet you all, but thankful that are paths have crossed. Happy Thanksgiving to you all. Carol in Culver, IN - Original Message - From: [EMAIL PROTECTED] To: ROBERT DIEHL ; tmic Cc: [EMAIL PROTECTED] Sent: Wednesday, November 22, 2006 8:47 PM Subject: Re: [TMIC] A VERY HAPPY THANKSGIVING TO ONE AND ALL DITTO! mARGIE IN NAPERVILLE On Wed, 22 Nov 2006 17:43:19 -0500, ROBERT DIEHL wrote HAPPY THANKSGIVING EVERYONE have had tm since 4/01/04 concider myself amoung the walking wounded can walk and drive...use a cane when out in the public this web site has bee a godsend to me for information i have learned more about myself than from my doctor Bob from Pa. -- WOW! Homepage (http://www.wowway.com)
[TMIC] Avoiding Post-Lumbar Puncture Headaches
Here is some info regarding the time frame of headaches and using a smaller needle to avoid headaches. The website has more info. I have just pasted a portion of the webpage below. Carol in Culver, IN http://www.pulmonaryreviews.com/dec00/pr_dec00_puncturehead.html AVOIDING POST-LUMBAR PUNCTURE HEADACHES ST. PAUL, MINN, AND GLASGOW, SCOTLAND--Nearly a third or more of patients who undergo a diagnostic lumbar puncture experience headache following the procedure. Headache onset typically occurs 24 to 48 hours after the procedure, lasts for one or two days, and is often severe enough to immobilize the patient. To lessen the risk of post-lumbar puncture headache, the American Academy of Neurology (AAN) recently recommended the use of smaller needles for diagnostic punctures.[1] According to the AAN report, angle of needle insertion, replacement of the stylet, and needle design also appear to influence the likelihood of post-lumbar puncture headache. - Original Message - From: [EMAIL PROTECTED] To: Carol [EMAIL PROTECTED]; tmic-list-at-eskimo.com tmic-list@eskimo.com Sent: Wednesday, November 15, 2006 11:13 AM Subject: [TMIC] spinal tap Carol I've never been given an answer to my three days of pounding headaches during rehab. I had a lumbar puncture on a Monday, never moved and had no leakage. My headaches didn't start until Wednesday and lasted through Friday evening. The noise in my head was so loud I couldn't hear what people were saying. I've always wondered if this was from the LP. Everyone just shrugged it off. I never get headaches - never - so I was an experience I'll never forgrt. Patti - Michigan
Re: [TMIC] Hey tmic ;)
ok, thank you very much. Carol - Original Message - From: L T CHERPESKI To: Neil ; tmic-list@eskimo.com ; Carol E Cc: TM List Sent: Monday, November 06, 2006 1:02 AM Subject: Re: [TMIC] Hey tmic ;) Hi Carol, Neil is a very good TM friend who has not posted for a while but I hope he comes back with all his humor and charm. Linda in Eagle,ID - Original Message - From: Carol E To: Neil ; tmic-list@eskimo.com Sent: Sunday, November 05, 2006 8:29 PM Subject: Re: [TMIC] Hey tmic ;) Hey Neil, don't mean to offend you, but who are you? I don't remember seeing any messages from you on the TMIC list before. AND what is this link to?Carol in Culver, IN- Original Message - From: "Neil" [EMAIL PROTECTED]To: tmic-list@eskimo.comSent: Sunday, November 05, 2006 10:16 PMSubject: [TMIC] Hey tmic ;) http://www.hi5.com/register/NHINU?inviteId=P3VU834ENO102433293t0 Neil
Re: [TMIC] Hey tmic ;)
Hey Neil, don't mean to offend you, but who are you? I don't remember seeing any messages from you on the TMIC list before. AND what is this link to? Carol in Culver, IN - Original Message - From: Neil [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Sunday, November 05, 2006 10:16 PM Subject: [TMIC] Hey tmic ;) http://www.hi5.com/register/NHINU?inviteId=P3VU834ENO102433293t0 Neil
[TMIC] CellCept!!!!
I take it no one has been prescribed this medication. Could any of the medical professionals comment on this medication.Since I am Type I diabetic, it has been suggested that I am given CellCept rather than steroids since it makes my diabetes uncontrollable. Carol in Culver, IN
Re: [TMIC] Walking Pain
Hi Todd, How long have you been using Anodyne Therapy and do you think your condition has improved since you began using it. I asked my neuro about it, even went as far and taking him an article from this website you mentioned in your email. He refuted it and said there is no scientific evidence regarding it. I am still very interested in it. I don't know why some doctors turn their nose up to something that might help to make a patient more comfortable. My thought was to let me try it. If it helped then great, if it didn't help, no harm done. Do you use it for circulation, pain or some other reason? Thank you for your help. Carol in Culver, IN - Original Message - From: Todd Tarno To: [EMAIL PROTECTED] ; TMIC-LIST@eskimo.com Sent: Friday, October 27, 2006 3:51 PM Subject: Re: [TMIC] Walking Pain I still walk with a walker, but here are my exercise 3 times a week. I have an island in my kitchen to do tipsy toe, squats, and forward lounges. Standard bicycle for 10 mins. Now at level 3. Floor exercises that my PT gave me and use Anodyne Therapy for 2 1/2 hours. www.anodynetherapy.com I need to get back to using my TENS machine again. Maybe I will start tonight. Todd in Corpus Christi, TX TM since April 1, 2002[EMAIL PROTECTED] wrote: Other than Neurotin what other medications do you take for tightness pain managmenet? Also, for those of you walking , what did you do to build up your endurance and leg muscles? Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.
Re: [TMIC] Update Newbie Inquiry
Hi Michelle,
In regards to your question, "Is
Copaxone my only option?" Please take a look at the
followingwebsite. It does an excellent job of comparing the MS
drugs. Hope it will help you. Sorry that I don't have any answers
for you regarding prescription assistance.
http://www.nationalmssociety.org/Brochures-Comparing.asp
Carol in Culver, IN
- Original Message -
From:
[EMAIL PROTECTED]
To: tmic-list@eskimo.com
Sent: Wednesday, October 11, 2006 2:25
AM
Subject: [TMIC] Update Newbie
Inquiry
Good evening Group,I'm Newbie Michelle
from Bothell, WA who was just diagnosed several weeks ago with MS. 9/10
I awoke to the numbness again in my legs only to be hospitalized two days
later. Not walking without assistance the symptoms only increased
throughout the week. 2000 I was diagnosed with TM after an attack with
all the same symptoms but recovered with little limitations. Now just
finishing finally my prednisone/steroids I am improving daily.
Now walking again on my own just a little wobbly at times ;-) and muscles are
strengthening. My hands are still asleep with pins and needles though
due to my lesion being at C5 this time whereas before it was T5-T7. I
know that I am fortunate to be recovering again and walking on my own
again. I am grateful and blessed. The doctors want to put me on
Copaxone (daily injection). I wanted to ask if anyone is on this, their
experience with it and if insurance covers this medication. I received a
letter from Shared Solutions, which is through PPARX (Partnership for
Prescription Assistance) who stated that insurance companys did not cover
this. We currently do not unfortunately have medical insurance and this
prescription is $1,300 to $1,500 a month. OUCH! Who can afford
that! We are applying for PPARX assistance of course. Also has any
MSrs out there discovered any successful alternative treatments. Is
Copaxone my only option? {sigh} Thanks!!!
MichelleBothell, WATM2000 to MS2006
Re: [TMIC] Update Newbie Inquiry
Michelle! Hello Again,
I was just looking over the website I sent you,
and guess WHAT? There is information listed on it about Industry-Sponsored Sites for Patient Information and/or Financial
Assistance. You'll find it about half way down the page.
:)
Carol in Culver
- Original Message -
From:
[EMAIL PROTECTED]
To: tmic-list@eskimo.com
Sent: Wednesday, October 11, 2006 2:25
AM
Subject: [TMIC] Update Newbie
Inquiry
Good evening Group,I'm Newbie Michelle
from Bothell, WA who was just diagnosed several weeks ago with MS. 9/10
I awoke to the numbness again in my legs only to be hospitalized two days
later. Not walking without assistance the symptoms only increased
throughout the week. 2000 I was diagnosed with TM after an attack with
all the same symptoms but recovered with little limitations. Now just
finishing finally my prednisone/steroids I am improving daily.
Now walking again on my own just a little wobbly at times ;-) and muscles are
strengthening. My hands are still asleep with pins and needles though
due to my lesion being at C5 this time whereas before it was T5-T7. I
know that I am fortunate to be recovering again and walking on my own
again. I am grateful and blessed. The doctors want to put me on
Copaxone (daily injection). I wanted to ask if anyone is on this, their
experience with it and if insurance covers this medication. I received a
letter from Shared Solutions, which is through PPARX (Partnership for
Prescription Assistance) who stated that insurance companys did not cover
this. We currently do not unfortunately have medical insurance and this
prescription is $1,300 to $1,500 a month. OUCH! Who can afford
that! We are applying for PPARX assistance of course. Also has any
MSrs out there discovered any successful alternative treatments. Is
Copaxone my only option? {sigh} Thanks!!!
MichelleBothell, WATM2000 to MS2006
Re: [TMIC] Sudden Onset
Hello to all, I have been rather quiet lately, hoping to be able to write you all and tell you that I have a new diagnosis.But I can't do that YET! I definitely think it is good to reach out and ask for everyone's opinions, help and support. And that is what I am doing right now. I was diagnosed with TM in June 2005. After what was thought to be 2 or 3 relapses within 1 year, my neuro thought I might have MS. After a repeat brain MRI and a Vision Evoked Response Test, which both were negative for MS, he discussed my case with 2 of his colleagues.One said I have MS and to start me on drugs right away and the other one said I did not have MS and not to start me on drugs. When I asked my neuro which side of the fence he was on, he said he liked to know what he was treating and with me he didn't know. I went to see Dr. Kerrthis pastAugust. Hewas very emphatic that I did nothave MS and hethought it was doubtful that I had TM. Since Ihad coronary artery bypass surgeryabout 9 years ago, he was leaning toward possibly of vascular disease in my back, ie, maybea blockage in my vessels in my spine leading to my lower extremities. So...back home I came to have more testing. He sent a letter to my local doctor, outlininghis suggested test. My local doctor isvery slowly going through these tests. To date, I have had only 2 of them; the ultrasound of the descending aorta and an MRA of the spine. (I had never heard of an MRA) Both ofwhichare negative. So thenexttest is a spinal angiogram. Has anyonehad thisperformed? Mysymptoms began with a slight low back painwhile bending over the bathtub to give my granddaughter a bath. After that, she went to sleep in her swing, and I napped on the sofa. When I awoke about 1 hour later, my right leg had an intense needles and pins feeling from the toes up to the knee. Within in 1 hour, this needles and pins feeling progressed up to my hip. I went home to bed and the next morning I could not move my right leg. I had to lift it out of bed. I had only slight tingling in my left toes and that was all on my left side. Now 16 months later, my left leg has decreased sensitivity and slight banding, but I have good muscle control. I remember complaining to my doctor about a backache 2 months prior to the onset of this.He ordered an x-ray of my back, which was negative. I also rememberaround this same time, my bottom having a needles and pins feeling when I sat in my office chair. I just laughed it off thinking I needed to get off my butt and go out and make some sales calls (to doctors no less). My local doctors said the pain from giving the baby a bath and these other things have nothing to do with my current problem, TM or whatever! Oh, one last thing I found interesting. Dr. Kerr said my spinal tap that I had while in the hospital June 2005 was negativefor TM. So could someone explain why my doctors continued with a diagnosis of TM? Carol in Culver, IN Living in limbo, but sure can't do it! TM T8-T10 (maybe) - Original Message - From: Robert Pall To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; TMIC-LIST@eskimo.com Sent: Monday, October 09, 2006 8:36 AM Subject: RE: [TMIC] Sudden Onset My TM started as a feeling of first my right leg going numb, followed about an hourlater with my left leg doing the same. In all it took less than 3 hours for me to lose all sensation below my waist.Even though it is over 9 years ago I cannot recall any pain whatsoever. In fact all of my discomfort started months later when some feeling returned. Unfortunatley thefeeling that returned was pins and needles, numbness, and horrible banding. I had my annual evaluation last week with Dr. Kerr and as always he gave me hope. He is going ahead full steam with stem cells and hopes to havehis first human tests within 2-3 years. As always I volunteered tobe in the first group.Don't lose faith, I truly believe help is on the way...if not for some of us old timers, certainly for the younger people in our group. Rob in New Jersey From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Monday, October 09, 2006 7:56 AMTo: [EMAIL PROTECTED]; TMIC-LIST@eskimo.comSubject: Re: [TMIC] Sudden Onset My onset was sudden also, but not with numbness, but severe pain. The pain was from the mid chest to toes, and extreme. I thought I was having some problem with my back as I have had some low back issues in the past, but never like this before. To me, it felt like childbirth was a breeze next to this, and I had natural childbirth without anesthesia, none at all!! I had just gone to bed and rolled over to give my hubby Pete a kiss and hug goodnight when it started, (quite lethal, eh)? When I couldn't get comfortable by changing positions on the bed with pillows between my knees, I changed positions all over the bed, top, bottom, etc. Pete was beside
Re: [TMIC] today's feat
Congratulations! Great work. I know how hard it is. I can not use my right foot for the brake as I just can't move it quickly enough to get over there. I do just fine using my left foot for the brake. The first time I tried to drive, I nearly went through my daughter's garage door. We both laughed later, but it was a pretty tense moment. I was in forward instead of reverse! LOL! That was my brain not working, NOT my legs! Carol in Culver, IN - Original Message - From: Krissy Z To: TM List ; TMA-New-England Sent: Thursday, September 28, 2006 3:37 PM Subject: [TMIC] today's feat I drove today! first time in over a year...was hard and used every muscle in my thigh and my foot slipped sometimes but I DID it ~Brightest of Blessings~ ~Krissy~ ·.»§« ·´¯`·.,¸*¸,.·´¯`·.»§«·.»§« ·´May today there be peace within you. May you trust that you are exactly where you want to be.Life is not measured by how many breaths we take, but by the moments that take our breath away.Destiny is no matter of chance. It is a matter of choice. It is not a thing to be waited for, it is a thing to be achieved. ·.»§« ·´¯`·.,¸*¸,.·´¯`·.»§«·.»§« ·´¯`·.,¸*¸,.·´¯`·.»§«·. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.
Re: [TMIC] no emails
Ya, I haven't had any since Thursday either. :( Carol in culver,IN - Original Message - From: cindymcleroy To: Heather Pieter ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Saturday, September 09, 2006 11:51 AM Subject: Re: [TMIC] no emails I haven't had any emails either since Thursday. - Original Message - From: Heather Pieter To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Saturday, September 09, 2006 7:15 AM Subject: Re: [TMIC] no emails Cherly, You must have a problem as there have been e-mails since Thursday. Heather in Calgary p.s. today is my sister Cheryl's birthday. - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Saturday, September 09, 2006 8:00 AM Subject: [TMIC] no emails Hi, Somehow I got unsubscribed from the list on Thursday,and I resubscribed.I haven't had any mail since Thursday a.m. I wondered if it's super quiet,or do I have a problem? Cheryl in Easthampton,Mass. Do you Yahoo!?Everyone is raving about the all-new Yahoo! Mail. No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.405 / Virus Database: 268.12.2/442 - Release Date: 9/8/2006
Re: [TMIC] Gift for you all!
How neat. Thanks! Carol in Culver, IN - Original Message - From: Krissy Z To: TM List ; TMA-New-England Sent: Monday, August 21, 2006 7:31 PM Subject: [TMIC] Gift for you all! I had this made today(Gilly, you know full where and how LOL)I am so pleased with it! hope you all like it(if the attatchment doesnt come thru I will be posting it on a web site here:http://i14.photobucket.com/albums/a314/LadyKOM/TM/tmawareness.gifplease feel free to save it for yourselves!Krissy ZoddaTri State Support Group Leader(603)589-1894http://www.geocities.com/tmladyk/home.html~I'm In pretty Good Shape For the Shape I am in~ Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.
Re: [TMIC] mail
Man! I was gone for only 4 days and I had gads of mail. Did you use your deodorant? LOL! Carol in Culver, IN - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, August 18, 2006 4:39 PM Subject: [TMIC] mail Have been gone for a week and have no mail from the group. Are we all on vacation or do I have a problem at my end? Ann in Virginia
Re: [TMIC] diabetees and tm?
I have this question on my list to ask Dr. Kerr next Monday. I will report back what is opinion is. Carol in Culver, IN - Original Message - From: jeff bernier To: tmic-list@eskimo.com Sent: Wednesday, August 09, 2006 9:34 PM Subject: [TMIC] diabetees and tm? is anyone aware of a connection between the two,this was brought up on the list and this is the first ive ever heard of it,one of our new members neuro told him they were connected.i think i would question that.somthing doesnt sound right.DIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US. Do you Yahoo!?Everyone is raving about the all-new Yahoo! Mail Beta.
Re: [TMIC] Coincidence?
Now that is really STRANGE! Carol in Culver, IN - Original Message - From: Trudy OGILVIE To: TMIC-LIST@eskimo.com Sent: Wednesday, August 09, 2006 9:11 PM Subject: [TMIC] Coincidence? I worked in a school that was renovated and an entire new wing added. My computer lab was upstairs and next to me was a 5th grade teacher. Eventually she switched schools andwe lost contactwith each other for a few years.In February of 2002 I was hit with TM. In May I went to Johns Hopkins for a "second opinion". She was there, the same day I was. She has TM but a very mild case. She has made an excellent recovery. Tho her extremities were affected and she can't walk for as long as she used to she's doing very well. What is the chance that two people from the same school come down with TM at the exact same time... Trudy
[TMIC] California
Anyone out there live near Healdsburg, CA? I am going to be out there on vacation fromJuly 25-29. Maybe we can connect. Write ASAP as I will be leaving home at noon tomorrow, Monday. Carol in Culver, IN T 8-10
[TMIC] to those with MS
Okafter much deliberation and 3 relapses, my doctor is going to change my diagnosis to MS and start me on shots. I'd like to know about your experience withthe shots and what all of you are taking. Thanks for your input. Carol in Culver, IN
Re: [TMIC] OT-HOUSE
I have never watched House. Guess I will have to start. Carol in Culver, IN - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Wednesday, June 21, 2006 3:33 PM Subject: [TMIC] OT-"HOUSE" Did anyone see "House" last night? The patient was diagnosed with TM which was a result of an extremely high exposure to radiation; consequently, the patient died. Dr. House has mentioned TM several times. Priscilla in TN
[TMIC] Pain
I was diagnosed with TM 1 year ago, June 16th. So far, I have only some discomfort in my body and no real pain to complain of. My question isis that the way everyone starts out and then the pain comes later? Does it make a difference where your lesions are? Mine is at T8-T10. Should I be expecting the hammer to fall any day? Your input would be appreciated. Carol in Culver, IN
