Re: [TMIC] I'm back!
Jaron, While you're in Brazil I think you should check out the juices with Acai Berry in them. I have gotten TREMENDOUS relief from drinking this (new to my area) juice called Mona Vie that I've even become a distributor. Its some super antioxidant berry that I am quite sure has anti-inflammatory properties to it. It may not work for everyone but I even have my Dr. hooked on it. And he said he has other patients that drink it and have found relief. Give it a try (at least for a month or 2) and let me know what you think. Have a great day! Jill in Chicago --- On Mon, 7/5/10, j ra rumc...@hotmail.com wrote: From: j ra rumc...@hotmail.com Subject: [TMIC] I'm back! To: Transverse Myelytis tmic-list@eskimo.com Date: Monday, July 5, 2010, 8:40 AM Hi guys, A couple of months ago I left Brasil for the Caribbean to spend some time alone and try to rediscover life before TM. It's been tough, especially because I decided to quit meds. No gabapentin, no miosan (for the shakes, think it's called xanaflex elsewhere) no valium, just sleeping pills. I know most of you thought I was pushing my wife away, but she's been really understanding as to why I needed to regain some independence. I did all the things I said I was going to do and I proved that TMers still have a lot of life in them. I know I am lucky to be a walker, allbeit with a cane, but we are strong people. As a group, we can do anything and we are always going to be there for eachotherno matter what. I really think that without you guys, I could not complete my journey, so thanks! Here's the weird part, I found a little girl with TM in Trinidad, my home country in the Caribbean. I saw an article about her in the newspapers and decided to contact her parents. I met them. The kid's name is Christa. She is 10 years old and has been diagnosed with TM some 10 months now, but her family does not have the money for treatment and treatment is not available in Trinidad. So they've been battling with this thing of ours all the while without proper care, so I got involved. Christa, is the sweetest little kid I ever met, she makes your heart melt with her innocent smile and she's so upbeat all the time, despite being in a wheelchair. She has the strenght that I think I was looking for all along. Imagine, I actually thought that while I was there I was going to do everything in my power to help her, but all along she was helping me. Her parents managed to raise somewhere near $12 US already and they plan to take her to Johns Hopkins. I got in contact with the doctors there and they are ready to accept her case. So, I'm not sure what actually happened to me over the last few months, but I think I found what I was looking fornot in a selfish journey to the islands, but in the eyes of a child. Now I'm home in Rio de Janeiro and I think I'm going to play with my cat for a bit then take my wife out for lunch, then take her to the FIFA World Cup finals in South Africa. Another journey perhaps, this time with my wife! Bye guys, Jeron Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
Re: [TMIC] Back on!!!
I think the weather you're looking for is in Fijilol
--- On Sat, 12/5/09, CANDIS KALLEY cakal...@embarqmail.com wrote:
From: CANDIS KALLEY cakal...@embarqmail.com
Subject: Re: [TMIC] Back on!!!
To: tmic-list tmic-list@eskimo.com
Date: Saturday, December 5, 2009, 4:25 PM
#yiv31901541 p {margin:0;}
Mary, Welcome back! You and Jan have 10 years on me - my anniversary is
coming up 1/5/06 for the first attack and 1/30/06 for the second attack.
I'm in SW FL and can relate to being too hot - Mid June to Mid Sept here is
REALLY bad - then we get a week or 10 days in Dec. or Jan. that's too cold for
me. I'd prefer to be somewhere where its 75 - 78 degrees with 50% or
less, humitidy year round BUT don't know of any such place.
Life is short! Break the rules! Forgive quickly! Kiss slowly!
Love truly, Laugh uncontrollably .
And never regret anything that made you smile.
Prayers and thoughts for you and yours,
Candy K.
- Original Message -
From: Jan Hargrove jmh1...@sbcglobal.net
To: Mary mew1...@gmail.com, tmic-list tmic-list@eskimo.com
Sent: Saturday, December 5, 2009 1:17:14 PM GMT -05:00 US/Canada Eastern
Subject: Re: [TMIC] Back on!!!
WELCOME BACK!! You and I were both gifted with tm in '96..
janh Stillwater, OK
From: Mary mew1...@gmail.com
To: tmic-list@eskimo.com
Sent: Fri, December 4, 2009 8:13:18 PM
Subject: [TMIC] Back on!!!
Hello to all of you.
I have been off and on here since 1997mostly off I guess!
Just got a new computer. Mine has been down for about a year or more.
My name is Mary Woods and I've had TM since 12/2/96.T-6. I am mobile but with a
limp, incontinence, memory and cognitive problems.
I formerly lived in Auburn Ca, (too hot) but moved to the coast of No.
Calif and it's about 30 degrees cooler here.
I've been reading your e-mails for about 2 weeks and decided to join in.
Lots of the same people and many new ones. Welcome!!
More later
Mary
Re: [TMIC] Swine Flu
I have not gotten any vaccines yet because I was on the fence about it. I have gotten the flu vaccine in the past and was fine. However, my MS Dr. told me to get the vaccines, but do not get the kind that are taken in your nose. Happy Halloween, Jill --- On Sat, 10/31/09, lynne myers lynnemye...@yahoo.com wrote: From: lynne myers lynnemye...@yahoo.com Subject: Re: [TMIC] Swine Flu To: tmic-list@eskimo.com Date: Saturday, October 31, 2009, 7:37 AM My physician has told me not to get any vaccines. Because TM is caused by the immune system over reacting there is a chance that any thing that activates your immune system can cause it to over react again. Lynne --- On Sat, 10/31/09, C E snow121...@hotmail.com wrote: From: C E snow121...@hotmail.com Subject: [TMIC] Swine Flu To: tmic-list@eskimo.com Date: Saturday, October 31, 2009, 8:26 AM Did you get the H1N1 vaccine? What kind of comments did your physicians make regarding his recommendation for you to receive it or not receive it? Do you have TM, MS or something else? You may reply to the list or directly to me, whichever you prefer. Carol in Addison, IL Windows 7: I wanted more reliable, now it's more reliable. Wow!
[TMIC] TM and Lupus question
After 6 years and 2 TM episodes I finally got a diagnosis yesterday. I went from having TM to MS to no MS to Lupus. Oddly enough all normal lupus tests come back negative, but theres a new and specific one that came back positive. The crazy part is I was taking shots for MS since March! Good thing I went to a bigger and better hospital in the city. Do all of you out there with Lupus have multiple TM episodes? I know there is a whole spectrum of symptoms with Lupus. Do your doctors have you on any specific Lupus Meds? He just told me to take a baby asprin/day alond with Vitamin D and fish oil. Thanks for your input, Jill in Chicago
Re: [TMIC] weird sensations
Kathy, Apply for PUBLIC AID All the illegals get it!!! And they get our MEDICARE TOO! Take it from me...I work in a hospital. I don't know how it's done, but it can be done somehow. You cannot be denied healthcare yet and you deserve it. Just don't give them your SS#. Jill's two cents in Chicago --- On Tue, 9/15/09, LadyOwl1961 k...@frontiernet.net wrote: From: LadyOwl1961 k...@frontiernet.net Subject: Re: [TMIC] weird sensations To: tmic-list@eskimo.com Date: Tuesday, September 15, 2009, 10:26 AM Morning All: Well it is day three of this vibrating feeling. I did not take Lyrica yesterday morning or this morning but continue to take it at night or I will never sleep. I wake up during the night feeling like I am going to bounce right off the bed. The only good thing is that it does not last as long as it was. I can now add tired all the time to what I am feeling but I am sure that is just from the lack of a good nights’ sleep. I am beginning to feel worse and worse as each day passes. This is really messing with my head. Frank the reason I cannot see is a doctor and am not eligible for any type of disability, or medical care is because I am a Canadian who married an American in 1999 and only have permanent residency in the USA. I am not in Canada for 153 days a year so I am unable to have Canadian health care or claim disability. My husband is a contract worker in the States (only type of employment available right now) and health care through the company is so expensive and we do not get much coverage. An example of this is my TM was acting up and I tripped and banged my toe into the wall, it became so swollen I could not walk, since we had health coverage at the time Hubby took me in to Urgent Care, the Doctor took a look, ordered a x ray, and sent me home with a boot. About 2 weeks later we get the bill, this service cost $260.00 and we had to pay $190.00. So for paying over $450.00 a month for 6 months we still had no real difference in heath care. I am sooo lucky to have a family doctor in Canada who lets me pay for a visit so I can keep my medications up. Also I am so lucky to live not far from Canada that we can afford to go up there a few times a year to get my medications. I am really frustrated with the American system of health care. Being born and raised in Canada and living in the USA for ten years has really made me realize I had it so lucky in Canada. I get very mad at the commercials putting the Canadian Health Care system down. Yes we did have to wait a little longer for some tests but whenever I HAD to have a test I had it within a week. An example of this was with my Breast Cancer. I found a lump, got in to see my doctor within 3 days, within a week was at specialist and had all the tests done within another week and started on Chemo within a month. I was not charged anything. I did not have to dip into my savings, retirement fund or be billed ANYTHING. Even most of my medications were covered. All this for an extra cost through work of $87.00 a month for extended Health Care. I had a semi private coverage meaning I was only in a room with one other person while hospitalized as well as so many more benefits as eye and dental care. I am terrified right now concerning my husbands’ and my heath. My husband has not seen a doctor in about 8 years because my health has taken up all of our benefits. We have eaten up most of our retirement fund due to this economy and trying to survive. We just get ahead of the game and then something happens (Hubby gets laid off, I get sick, I need meds, dog gets sick or our 11 year old car needs fixing) to set us back into the hole again. I laugh when they tell people with TM to avoid stress as it just seems to live with me. Right now my husband is trying to get a job in Canada so that at least he knows if I get really sick I will be taken care of. I am hoping he gets one there so that he can re-coup his 401K so that he can have some type of life when he retires. Maybe he should just divorce me and me move back to Canada and go on Social Assistance so as not to be this burden on him any longer. I love him more than life itself but it seems like the only solution for me here. Anyway maybe all this stress is why I am vibrating, who knows but the only thing I do know is I am scared of what is going on with me and really wish I was living back in Canada and covered. I would not even mind a month wait to get into a doctor just because I know I would not have to live on the street to pay for the treatments needed. Kathy who is frustrated, hurting, depressed and scared.. - Original Message - From: Jill Z To: LadyOwl Sent: Tuesday, September 15, 2009 6:43 AM Subject: Re: [TMIC] weird sensations Kathy, How are you now? Jill in Chicago --- On Mon, 9/14/09, LadyOwl k...@frontiernet.net wrote: From: LadyOwl k...@frontiernet.net Subject
Re: [TMIC] Looking for TMr's for support groups
Jill From Chicago --- On Sun, 9/13/09, Laura Beaudin laura.beau...@gmail.com wrote: From: Laura Beaudin laura.beau...@gmail.com Subject: Re: [TMIC] Looking for TMr's for support groups To: Catherine camoa...@yahoo.com Cc: kevin weilacher hwyfli...@yahoo.com, Transverse Mylitis Group tmic-list@eskimo.com Date: Sunday, September 13, 2009, 8:29 PM ...and I'm Laura from Edmonton, Alberta. :) On Sun, Sep 13, 2009 at 7:25 PM, Catherine camoa...@yahoo.com wrote: Kevin, That is a wonderful idea. Why don't we all just say where we are from .. as I have seen here. Several support groups may start. Thank you for a great idea So I will start... Catherine, caretaker Central Mass.
[TMIC] Unidentified subject!
I wonder if this could work for TM? Does anyone take this blood pressure medicine and notice any difference? Maybe with some blue gatorade and blue MM's it would work better...hehe http://www.webmd.com/multiple-sclerosis/news/20090817/blood-pressure-drug-may-help-treat-ms?ecd=wnl_mls_091109
Re: [TMIC] able to move slightly
Jim that is great! No pain no gain. Have you been eating blue MM's or something??? --- On Mon, 8/24/09, Jim Lubin jlu...@eskimo.com wrote: From: Jim Lubin jlu...@eskimo.com Subject: [TMIC] able to move slightly To: tmic-list@eskimo.com Date: Monday, August 24, 2009, 3:26 PM The past two weeks I started feeling a tingling in my right lower back. When I feel this I am able to move my left thumb! It's been 20 yrs, 4 mos since I was paralyzed from the neck down due to TM. When I recline the tingling stops and I can not move my thumb no matter how much I try to. To show that I was actually moving and not just having involuntary twitching, I had my nurse tell me when to move and I moved it. Here is the video http://www.youtube.com/watch?v=Tw__9ZDv_hU Jim Lubin jlu...@eskimo.com http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] That banding feeling
I had that banding feeling when I first got diagnosed 5 years ago also. But with my second attack in January I didn't have it thank God! --- On Tue, 8/11/09, pjv1...@chartermi.net pjv1...@chartermi.net wrote: From: pjv1...@chartermi.net pjv1...@chartermi.net Subject: Re: [TMIC] That banding feeling To: laura.eich...@gmail.com, tmic-list@eskimo.com Date: Tuesday, August 11, 2009, 6:38 PM I've had TM for five years and don't expect an MS diagnosis. I've had the banding trom the beginning. During one of my steroid IV's (first five days) I rang for help and told the nurse I couldn't breath and something was squeezing my chest. It was painful and I asked her if I could be having a heart attack. I still get banding on a regular basis, however, I don't panic, I work harder at breathing and hope its time for some Baclofin. Patti - Michigan laura.eich...@gmail.com wrote: Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura
Re: [TMIC] arts page
Wim I really like your paintings! What talent. I really LOVE the palm tree
one. That would go great with the decor in my house.
Jill
--- On Sun, 7/5/09, wim from holland wim_from_holl...@hotmail.com wrote:
From: wim from holland wim_from_holl...@hotmail.com
Subject: [TMIC] arts page
To: TMIC tmic-list@eskimo.com
Date: Sunday, July 5, 2009, 8:18 AM
#yiv1749170787 .hmmessage P
{
margin:0px;padding:0px;}
#yiv1749170787 {
font-size:10pt;font-family:Verdana;}
In my TM time, already 12 years now I started painting as a hobby. Took a few
years lessons but the man fall in love and went to Letvia. Because the photo's
were not a succes to send them to you, I put them on a page at the internet.
The page is: http://members.tele2.nl/jw.deenik05/.
Wim from Holand
Haal meer uit je Hotmail met Internet Explorer 8. Download nu
Re: [TMIC] Update on Jim
Carol, That is great news! Glad to hear he's on the road to a speedy recovery. Continue to Keep us posted! Jill --- On Sat, 7/4/09, cjb...@aol.com cjb...@aol.com wrote: From: cjb...@aol.com cjb...@aol.com Subject: [TMIC] Update on Jim To: tmic-list@eskimo.com Date: Saturday, July 4, 2009, 10:30 PM What a difference a week can make. I am so thankful to have my honey on the road to recovery. The doctor said today that he will be at the hospital a couple more weeks and then to an in patient rehab. I am voting for Marlette which is where he had the rehab in 2005. I know many of the therapists he had have moved on to bigger and better things but the new ones will be good too and it is much closer than the over an hour ea way I have been driving each day. He is off the vent and ready to start building his muscles back up.Thank you all for your prayers and concern.GOD is so good. love ya carol and jim Make your summer sizzle with fast and easy recipes for the grill.
RE: [TMIC] Transverse Myelitis Network
Well said Tracy! Jill --- On Wed, 6/17/09, Tracey L. Black tracey.bl...@hnoins.com wrote: From: Tracey L. Black tracey.bl...@hnoins.com Subject: RE: [TMIC] Transverse Myelitis Network To: ladyno...@aol.com, heyjude48...@aol.com, tmic-list@eskimo.com Date: Wednesday, June 17, 2009, 1:14 PM As a caretaker/mother of a daughter who has had TM for 4 years now; this saddens me to read this. I am also a member of the one Yahoo TM site b/c for me it seems like it involves more children than adults and I can identify more with their issues. Since my daughter was inflicted at the age of 11 and is now 15 ½, I get lots of answers from the other site but also stay on this one b/c I want to know what the future may hold for my daughter as an adult. I know that we ALL have been saddened by the passing of Pam but this should not be a time to bicker and a time for people to quit the site b/c they feel as though they are traitors for checking out another site. There have been numerous times that I have tried to unsubscribe and for some reason, it never works. Maybe I am supposed to stay on this site for another reason. I know I don’t write very much and maybe this email will just be taken with a grain of salt. Fortunately, my daughter seems to have a much lighter case of TM than a lot of others on this site. With that in mind, I still continue to read everyone’s emails b/c they make me feel so much more blessed that my daughter didn’t get inflicted as badly as others although she does deal with one or two of the symptoms. I can’t imagine what most of you feel on a daily basis with the pain, fatigue, banding, sweats, cold feelings etc. My daughter hasn’t had any pain, other than at onset, and that was more of the tingling than anything. She is the typical 15 year old and walks, with assistance through high school every day (except for now b/c school is over) and she still hangs out with her friends, she helps me around the house and she even babysits the 4 year old and 1 year old boys next door. She was confined to her wheelchair at one time but thanks to Dr. Kerr for helping us get into the Kennedy Krieger Institute for Spinal Cord Injuries, she has been walking for about 2 years. Time has flown by over the last 4 years that it is hard to remember life before TM. I hope that everyone continues to stay on this site b/c it is full of great information and great people that are willing to answer any question that is ever asked. No one judges anyone for asking questions. As Pam would say !!TIAD!!! Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone- 717-334-6741, x 29 Fax-717-334-3414 My hours: 9:00 a.m. - 5:00 p.m. Thank you for providing information to us. Please be aware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained From: ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Wednesday, June 17, 2009 1:03 PM To: heyjude48...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Transverse Myelitis Network Jude, First of all, I never said I PREFER the paraplegic/quadriplegic site. I said I IDENTIFY more. I feel as though I offended you by saying this. There are issues and concerns of being a quad they are not addressed in the TM site and I would imagine it's because most people on this site are not quadriplegics. I go where I can find the information that helps me. If I did not want to be on this site, I could simply delete it from my contacts. There is nothing holding me back. I have asked questions on here regarding autonomic dysflexia, only to have no one respond. Because I later found out that it's a medical condition for quadriplegics, so I went to the paraplegic/quadriplegic site to get the answers I needed. I'm sure Jim uses these sites, HE CREATED THEM! Where is his hostility?? He knew that there would be a need for additional information, and that's all it is, is additional information. I have been a member of this site, since I came home from the hospital in 2006, but I am always looking for any and all information that could be of help to me (as I'm sure all of us would be). There are people that use this site that are also members on the Yahoo Transverse Myelitis site. Should they just pick one or the other. I have met many people through this site, one who has become my best friend who has TM. I would not trade that for anything, but your e-mail makes me feel as though I am unwelcomed or a traitor of sorts. This brings me to tears. As I have poured my heart out on this site (reluctant to make my personal problems public), but felt comfortable enough to share with others who are, also suffering with relationship problems, pain and depression.
Re: [TMIC] read receipts?
I get them with correspondence from my daughter's school. I guess they want to confirm which parents read the email --- On Mon, 6/15/09, Grace M. grace...@gmail.com wrote: From: Grace M. grace...@gmail.com Subject: Re: [TMIC] read receipts? To: jharpe...@aol.com Cc: k...@frontiernet.net, tmic-list@eskimo.com Date: Monday, June 15, 2009, 12:36 PM It's just a feature of mail programs that notifies the sender that their mail has been received and opened. I only use it for business correspondence. Grace
Re: [TMIC] Re: WHAT DID YOU DO???
My doc just told me it's VERY VERY important to take 3,000-5,000 IU of Vitamin D plus omega oils (either fish or flax) every day. Also anyone over 45 should be taking a baby asprin everyday. Fewer broken bones when we get older because the vitamin D helps the body absorb calcium which is needed for strong bones. Sorry to hear about your fall. You should send the cleaning lady the bill... just kidding. Jill in Chicago --- On Tue, 6/16/09, Cindy McLeroy cindymcle...@socal.rr.com wrote: From: Cindy McLeroy cindymcle...@socal.rr.com Subject: [TMIC] Re: WHAT DID YOU DO??? To: tmic-list@eskimo.com, jmh1...@sbcglobal.net Date: Tuesday, June 16, 2009, 6:09 PM You'll be sorry you asked, it's kind of a long story. I had time to kill on Sat before I went to a party, all dressed and ready to go. I notice that the cleaning lady didn't clean as well as I thought around the bottom of the toilet so I bent over forward on my wheelchair bracing myself with one hand on the toilet. cleaning with the other. Apparently I pushed my wheelchair out from under me and slid to the floor with my right foot twisted almost the way around. When I went to bed that night my leg was doing a snap, crackle and pop noise. Went to the ER the next day and the doctor said, Oh, your leg is broken. Duh. Anyhow, my frustration is dealing with the ER folks, my doctor and an Ortho. Seems all the Ortho's are booked. I can't wait because I have (lucky for me) no sensation and the splint that is on my leg is moving around and I'm sure digging. I want to avoid pressure sores. Always something interesting with TM. I think this is the fourth or fifth time I have broken one or the other of my legs. Once I simply rolled over in bed and heard the crunch. Cindy - Original Message - From: Jan Hargrove To: Cindy McLeroy ; Sent: Tuesday, June 16, 2009 11:51 AM Subject: Re: WHAT DID YOU DO??? Cindy, What in the world did you do to break your leg??? jan --- On Tue, 6/16/09, Cindy McLeroy cindymcle...@socal.rr.com wrote: And Sandy, how do you like the yellow medal plates that are being installed at the curb cutouts? Supposedly they are meant for the blind so that their sticks feel the different surface. I haven't talked to a blind person, a w/c user, or a fellow pushing grocery carts that like the danged things. Caster wheels get caught in between the bumps. This change was a lawsuit that back fired. Version Amphitheater in Irvine has done an amazing job of raising a portion of the seating above the orchestra section so folks in wheelchairs can see the stage when the rest of the people below are standing. Love it there. One of the ADA limits has to do with cost. If the modification is too costly and the building can show that, then they don't have to modify. Also, if the building is historic, they don't have to modify. Cindy (sitting home waiting for an otho doctor to get me in with a very severe broken leg...been to emergency already and had a splint) - Original Message - From: parkersw...@aol.com To: a...@artfarm.com ; tmic-list@eskimo.com Sent: Monday, June 15, 2009 2:44 PM Subject: Re: [TMIC] Accessibility Relationships Add to the list of complaints: Have you noticed that at many hotels, the ADA rooms are furthest from the elevators? And yes, you are lucky if they have ADA rooms on the first floor. Also, the rooms often face the parking lot and seldom the garden, pool or view? Is this discrimination? I feel it is. At some commercial stores or restaurants we have had to get Terry through the kitchen or the back door to get to the bathroom. In one instance, we had to go two buildings down! In passing, I mentioned this to a Civil Rights attorney I know and he said, lawsuit. We haven't pursued that, of course. This friend has filed many suits against large hotel chains, music festivals, etc., as they are hardly ADA compliant. He himself is disabled and knows first hand the discrimination. I am not saying whatsoever that every place discriminates, not by a long shot. But many business owners are not very aware of the disadvantages that people in wheelchairs are faced with. That's my tangent for the day. As a wife of a TM'er, if I have time tomorrow, I will try to address the relationship issue. Download the AOL Classifieds Toolbar for local deals at your fingertips.
Re: [TMIC] Where is everyone
I'm here too. --- On Tue, 4/7/09, fr...@franksheldon.com fr...@franksheldon.com wrote: From: fr...@franksheldon.com fr...@franksheldon.com Subject: Re: [TMIC] Where is everyone To: rn11...@yahoo.com, tmic-list@eskimo.com Date: Tuesday, April 7, 2009, 8:21 AM Everyone is getting ready for THE BIG BUNNY pH
[TMIC] What a great video!
Jim,
Thank you for the link to the video.
As a former fertility patient...My ex husband and I did fertility meds in
'99-2000 and of course they cannot put all of the cells they make inside of
you or you will end up like Octomom. They freeze them for a later date.
In my case we got divorced and who knows what happened to the cells. I wish
they could've benefitted someone whether it be another couple who wants a baby
or to help someone walk again.
However, most couples will usually choose to accept donated eggs OR donated
sperm. Usually one parent is a biological parent.
Jill
--- On Thu, 3/26/09, jrushton jrush...@columbiaenergyllc.com wrote:
From: jrushton jrush...@columbiaenergyllc.com
Subject: Re: [TMIC] stem cell (OT?)
To: Jim Lubin jlu...@eskimo.com, tmic tmic-list@eskimo.com
Date: Thursday, March 26, 2009, 10:36 AM
#yiv1851665673 v\:* {
}
#yiv1851665673 v\:* {
}
Thank you, Jim..Jeanne
---Original Message---
From: Jim Lubin
Date: 3/26/2009 12:21:40 PM
To: jrushton; Deborah Nord Capen; tmic
Subject: Re: [TMIC] stem cell (OT?)
Here it is. Worth watching.
Stem Cells and Neuroregeneration – The Future
Douglas A. Kerr, MD, PhD
Johns Hopkins University, Baltimore, MD
http://video.google.com/videoplay?docid=-25453169972889015
http://www.myelitis.org/rnds2008/stem_cels_MN_and_GRP_2008.pdf
At 09:27 AM 3/25/2009, jrushton wrote:
Thanks, Debbie!! If you don't watch/listen to anything else from that
Symposium, you should truly look for that part! It is SO important because we
have ALL been led astray and he makes it so easy to understand and he is the
expert along with his staff!!! He is also one of the main ones trying so hard
to get this passed in order to save those like you and I from living with our
disabilities. Had it been available at our onset, we may have had a chance to
be one of the 'lucky' ones and had this simple procedure done. I wish there
was a way to show just that one section of the Symp... Is there, Debbie? It
is so misunderstood that there will be those that could be helped but will
refuse only because of the misunderstanding. Jeanne in Dayton
---Original Message---
From: Deborah Nord Capen
Date: 3/25/2009 11:10:57 AM
To: gbthomas8...@sbcglobal.net ; Westgold; Amanda Diskey;
tmic-list@eskimo.com
Subject: Re: [TMIC] stem cell (OT?)
I will make just a short statement regarding this, as I do not wish to become
involved in a debate. Dr. Kerr has stated in all of his talks that the BIGGEST
mistake in the very beginning was to even give it the name embryonic stem
cells. They are NOT embryos. They are NOT aborted fetuses. They are
blastocysts - only two cells that could not ever survive outside of a petri
dish on their own. Because the scientists made this mistake in the beginning
of giving it the name embryonic stem cell, all of the right-to-life people
came out and attacked this research from the git-go.
If you view the talks from all of our symposia at
http://www.myelitis.org/events.htm and listen carefully to Dr. Kerr's talks on
stem cell research, you will have better knowledge of this.
Regarding the idea of going out of the country to receive treatments, Dr. Kerr
has also discussed this. The research is there, but the follow-up on the
patients is lacking, so they have no record of how the patients did AFTER they
left the country to go back home.
Take care,
Debbie
Jim Lubin
jlu...@eskimo.com
http://makoa.org/jim
disAbility Resources: http://www.makoa.org
[TMIC] For you MSr's
I know some of us TMr's turned into MSr's and I was just wondering have any of you experienced that Lhermette's sign when you bend your neck forward and get electric down your legs? And does that ever go away??? Thanks, Jill in Chicago TM '04 MS '09 :(
[TMIC] Haven't gotten any e-mails
Is anyone out there? I'm weaning off my prednisone now and had a few questions. Thanks, Jill
Re: [TMIC] More Lesions??
Well I went to the ER yesterday and got admitted of course and today finally got a full body MRI. Maybe tomorrow they'll start the solumedrol because they said I need an IV bag of it. I never had that before, so we'll see. I'm not really fond of the neuro on call because he says TM doesn't recur! I said well it has before. Ok so my family practice resident just walked out and said I have 2 new lesions at t 4 and 5 that werent there before. It still showed my one at T10 from years ago but I'll have to read the report again and write what it said. I'll write back when I know more. I still have no solumedrol drip!! --- On Sat, 1/31/09, lynne myers lynnemye...@yahoo.com wrote: From: lynne myers lynnemye...@yahoo.com Subject: Re: [TMIC] Exacerbation? Medrol Dose pack? To: Jill Z jillybean60...@yahoo.com Date: Saturday, January 31, 2009, 6:09 AM I have used the dose packs quite a few times with good success for exacerbations. Have only taken higher dose once and was on a month taper with that, it worked about the same but caused all kinds of problems with my adreanal glands so wont do that again. Lynne --- On Fri, 1/30/09, Jill Z jillybean60...@yahoo.com wrote: From: Jill Z jillybean60...@yahoo.com Subject: [TMIC] Exacerbation? Medrol Dose pack? To: tmic-list@eskimo.com Date: Friday, January 30, 2009, 9:08 PM Hi Everyone, I had another mild episode/exacerbation of TM the other night. I am a little weaker today than yesterday.(left leg weakness, right leg burning nerve pain) I couldn't get a hold of my regular neuro, but got a script for the Medrol dose pack from one of the docs in the ER. Normally my doc had me on 90mg to start, then taper down for a couple weeks. Should I take this lower dose? Is this better than nothing? Luckily this episode was not nearly as bad as the last one Any help would be appreciated! Thanks, Jill
[TMIC] Exacerbation? Medrol Dose pack?
Hi Everyone, I had another mild episode/exacerbation of TM the other night. I am a little weaker today than yesterday.(left leg weakness, right leg burning nerve pain) I couldn't get a hold of my regular neuro, but got a script for the Medrol dose pack from one of the docs in the ER. Normally my doc had me on 90mg to start, then taper down for a couple weeks. Should I take this lower dose? Is this better than nothing? Luckily this episode was not nearly as bad as the last one Any help would be appreciated! Thanks, Jill
Re: [TMIC] re:guidelines
If it's religious or political and you DON'T like it then just delete it. Simple and done. No big deal... --- On Fri, 10/24/08, Sandy Heidel [EMAIL PROTECTED] wrote: From: Sandy Heidel [EMAIL PROTECTED] Subject: Re: [TMIC] re:guidelines To: [EMAIL PROTECTED], tmic-list@eskimo.com Date: Friday, October 24, 2008, 1:36 PM I am going to agree with the addition of religion. I have been silent on the chronic requests for prayers and thanks to god and such...but if we are going to eliminate politics lets get rid of religion as well. I delete more messages now than I read so I can just continue to do that. But if we are going to respect each others politics then lets respect each others religion as well and stop with all those messages too. Sandy - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Friday, October 24, 2008 1:31 PM Subject: [TMIC] re:guidelines Hi Everyone, The list shouldn't be clogged with any political,religious,etc. messages.Just letters pertaining to tm. From a personal standpoint,I find it easiest to block the addresses of the people that send mesages I do not care to read. Cheryl in cool,sunny Easthampton,MA
Re: [TMIC] 19 year TM Anniversary - my thanks to TMIC
Hi All, I'm still on the list but don't have much to say since I had a pretty good recovery and I'm actually working 2 jobs thankfully and have been super busy. I do still think of my TM and continue to pray for all of you. Jill Jim Lubin [EMAIL PROTECTED] wrote: Whenever I hear this I tell people it's because the one-third of the people who do recover usually just want to forget it happened and don't join support groups. That's why you mainly read about those with poor outcomes. At 03:02 AM 5/21/2008, [EMAIL PROTECTED] wrote: When I first got my TM my family told me to please, not to go onto the TM website for the time being. That the info on the site was not optimistic and the people on the TMIC even had some pretty poor outcomes. Jim Lubin [EMAIL PROTECTED] Home Page: http://makoa.org/jim disAbility Resources: http://www.makoa.org
Re: [TMIC] Flu Shot
I get a flu shot every year before and after TM and nothing is any different. Jill Grace M. [EMAIL PROTECTED] wrote: I don't get flu or pneumonia shots either. Because my TM was a result of relapsing Devic's, it's just not a risk that I am prepared to take. That being said, however, I do have several friends with this disease who have gotten flu shots with no ill results. Grace
Re: [TMIC] my introduction to the group
HI Mindy, I haven't posted lately myself and I'm in about the same boat as you are. I have had Lhermette's sign on a few occasions in my 2 years of TM. I actually had it before then and blew it off because it went away. I have not had ANY symptoms in a while thank God. I just wanted to get back to you and let you know that is a symptom of mine that I've had more than once. Usually it's worse when I am stressed or sick etc. Hope that helps Jill Stacy Harim [EMAIL PROTECTED] wrote: Hi Mindy, I don't post often and I should be more active but I get caught up in other things and by the time I get to email, I'm overwhelmed. Anyhow, I got ADEM in 01 and it paralyzed me at T7. You are fortunate but still have the after affects as everyone else does. Lyrica is fairly new and proves to be good for neuropathic pain. I love it and used to be on neurontin. I see a pain specialist and if you are having any sort of pain issues, it might be a good idea. That is what they are trained for. Welcome, Stacy - Original Message - From: Lawrence King To: tmic-list@eskimo.com Cc: Lawrence King Sent: Tuesday, September 11, 2007 11:14 PM Subject: [TMIC] my introduction to the group Hello everyone, I guess Im ready to introduce myself. I just got the results of my 3rd MRI and the evidence clearly supports my June 25th 2007 TM diagnosis. My attack happened around the 7th of March 2007. It started with numbness and tingling in my legs for a few of days with the sense that a couple of times I thought my legs might give out on me. I blamed it all on the fact that my time spent on the computer had quadrupled the same week and because I had a lumpectomy (not cancerous!) scheduled on the 15th of March. Began to feel a tingling sensation when I tipped my head down a few days before surgery and blamed it on the lack of sleep and the stress and fear of surgery. Didnt notice much beyond the pain and bruising of having a ¼ cup of breast tissue scooped out for the next week but when that pain subsided I felt a continuous sense of shivering or buzzing and an electrical shock down to my finger tips and toes every time I tipped my head down with excessive tingling down my left arm. We now know the name for this symptom is called Lhermittes sign. Did not get to see a Neurologist until May1. At first the surgery department was blamed for giving me a stinger neck injury while under anesthesia. Then an MRI revealed a mass or lesion at the c4/c5 level, MS, tumors and TM were all considered. A lumbar puncture did not show evidence of a tumor, cancerous or otherwise but proteins associated with an attack of the myelin sheath were found. MS was dismissed because of my age (46) and absolute absence of lesions in my brain. My slow onset, extenuating circumstances and lack of dramatic symptoms made for a drawn-out diagnosis. Ive never had walking difficulties nor many of the other issues TM survivors face and after reading these posts for the last few months I think I have no right to complain even though electrocuting yourself every time you tip your head down is no fun, found Lyrica on my own and asked my doctor for it but Im wondering if there is something better Id also love to hear if anyone else has had Lhermittes sign and if their symptoms improved over time? Mindy the Artisan Mindy King www.chairweaver.com www.mirthworkscreations.com www.greatamericanbeanbag.com
Re: [TMIC] Carpal Tunnel questions
Kevin, In fact one of my friends from work had Carpal Tunnel surgery yesterday. I guess the pain in UNBEARABLE at times and she had a spur of the moment surgery because she couldn't stand it anymore. Some people live with it for years though. It's hard to say in our cases with TM as a factor too. The surgery isn't that invasive and the recovery time is pretty quick too. If it's bothering you that much, get one hand dont and see if it improves your hand and arm pain. If it doesn't, then it might just have to be chalked up to the TM I guess??? Jill Kevin Wolfthal [EMAIL PROTECTED] wrote: Dear Friends, Place this under the 'feel like tearing your hair out' category. Last year I had a neurologist and an orthopedist tell me I have carpal tunnel syndrome in both hands. This was after having MRI's and EMG's. Then I went to a hand surgeon. He sent me for another EMG because my (former) neurologist 'lost' the EMG results. (I noticed they still accepted the $1200.00 for the EMG from my insurance, who I reported them to but said they can do nothing). The new EMG apparently shows nerve problms in many nerves in my arms, so the hand surgeon doesn't think it's CTS anymore and can't help me. So now I have to start over with new tests, new neurologist... I just read that one of my BP meds, metoprolol, can cause numbness in the hands as a side effect. I'm having a physical on Monday and will ask about this. I know I've asked about carpal tunnel syndrome before, so please forgive me for asking again. If anyone has had CTS, would you mind relating your experience from symptoms to diagnosis and correction? Were you ever told that other nerves in your arms were affected? Thanks all, Kevin www.greatamericanbeanbag.com
Re: [TMIC] Re: Who's got what?
I don't mind hearing about people who have other diseases, syndromes, whateverI have TM and my best friend has MS. Sometimes we compare notes. It sure doesn't hurt since it seems like we're all in the same kinda boat. I'm always worried that my TM will come back OR progress to MS? Happy Mother's Day to all you moms! Jill Jan Hargrove [EMAIL PROTECTED] wrote: Here's my thinking, Bobby Jim has been at least with us 10 of the 11years I've been here, and he is a valued member of this group...his lady may have progressed to MS, but Bobby Jim is still here as a caregiver and a great friend and member of this family!!! My 2 ¢ janh [EMAIL PROTECTED] wrote: In a message dated 5/12/2007 7:18:41 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Me missus came down with TM in 97 September at T-8. No action taken; no meds, no nada. Then, in 99 Feb she had a second attack, this time at C-5,6. She was given steroids for a few dayze then about a month later, her dx was changed from TM to MS and we started her on Avonex. Nowadayze, 346 shots later, she's still on Avonex and holding up quite well. Yes, but MS is a totally different disease than TM, so what does she have to do with us? I'm happy for her that the medication for MS is working so well with her, but I'm afraid it wouldn't do much for me? What do you think, Frank? ElBobberino has much wisdom and a lot to share with us, but when he talks about his missus' , illness, it really has nothing to do with TM. Shouldn't they be sharing with those on a site for MS? Peace and Prayers, Jude - See what's free at AOL.com. www.greatamericanbeanbag.com
Re: [TMIC] May Birthdays
Happy Birthday May Babies!! [EMAIL PROTECTED] wrote: Happy Birthday to the May babies!! If any of the information below is not accurate, please send a correction to [EMAIL PROTECTED] If you don't see your birthday here and would like to have it added, please send the information 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]) - See what's free at AOL.com. www.greatamericanbeanbag.com
[TMIC] TM Pregnancy
Hi Everyone, I was wondering if there was anyone out there that has been pregnant and had a child since they've had TM? Was your pregnancy normal? Did you have any times where the TM got worse? I have a pretty mild case and am contemplating 1 more child. Thanks for all your help! Jill www.greatamericanbeanbag.com
Re: [TMIC] WONDERFUL NEWS
Great for her!!! Keep up the good work! Tracey L. Black [EMAIL PROTECTED] wrote: My daughter, Ashlee, has just permanently given up her wheelchair. She is now using an up n go walker and her forearm crutches as her only form of transportation!!! She is coming up on her 2 year anniversary with TM, on Feb 1, 2007. Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone - 717-334-6741, x 29 Fax - 717-334-3414 Thank you for providing information to us. Please beware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained. www.greatamericanbeanbag.com
RE: [TMIC] Use GoodSearch to Benefit TMA!
I do too...even if the website is in my favorites.. ROBERT COOK [EMAIL PROTECTED] wrote:I DO, DO THE REST OF YOU ALL? EVEN IF I KNOW THE WEB SITE. BOB - Original Message - From: Jim Lubin To: tmic-list@eskimo.com Sent: 1/19/2007 3:49:16 PM Subject: [TMIC] Use GoodSearch to Benefit TMA! Use GoodSearch to Benefit TMA! The Transverse Myelitis Association is one of the charities participating in GoodSearch, a new Internet search engine that donates half of the advertising revenue it earns to charity. Each time you use GoodSearch and designate the Transverse Myelitis Association as your charity of choice, GoodSearch will donate a portion of the advertising revenue earned from the search to the Transverse Myelitis Association. Its easy to use. Just go to the GoodSearch homepage www.goodsearch.com and type myelitis into the Who do you GoodSearch for? box, and click verify. After the first time, each time you return to the home page, Transverse Myelitis Association will appear as your designated charity. There is even a button you can click to see the number of searches and the amount raised. Add GoodSearch to your bookmarks or make it your homepage to mak! e it easier to use. Also, spread the word to your family and friends to help generate more contributions. GoodSearch estimates each search will raise $0.01 for your designated charity. 100 supporters searching twice a day could generate $730 a year, 1000 supporters - $7,300, and 10,000 supporters searching twice a day could generate $73,000! With your help, GoodSearch can generate donations, at no cost to you that will help fund the goals of the Transverse Myelitis Association. http://www.goodsearch.com/?charityid=607112 www.greatamericanbeanbag.com
Re: [TMIC] OT OT OT 2007
Happy New Year to you Jude and everyone else on the list. Let's make this the best year ever! Jill in Chicago [EMAIL PROTECTED] wrote: www.greatamericanbeanbag.com
Re: [TMIC] December birthdays
Happy Birthday December Babies!! [EMAIL PROTECTED] wrote: I can't believe we're just about into December already! Where did November go?? Happy Birthday to all the December babies! (Please send any additions or corrections to [EMAIL PROTECTED]) 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]) www.greatamericanbeanbag.com - Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers.
Re: [TMIC] Testing 1-2-3
I got these Carol E [EMAIL PROTECTED] wrote: Have not received any messages for 2 days. Is the list working? www.greatamericanbeanbag.com - Access over 1 million songs - Yahoo! Music Unlimited.
[TMIC] Baclofen and Neurontin??
Hi Everyone, Thanks for the input on the epidural injection. Well I didn't receive it today but I'm supposed to next Saturday. The doc prescribed Neruontin and Baclofen for my pinched nerve? I've never taken any of these for TM or anything else, but I know alot of you are on them. Can you tell me what each one does again? I'm a little leary to take it. Thanks, Jill www.greatamericanbeanbag.com - Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster.
Re: [TMIC] tingling pins/needles spreading in leg
Sharon, Yes. My left side is the bad side too, and that's how my TM started. My right foot also felt weird too. I was walking like a duck for a long time because I couldn't feel my leg and feet. I think you need to see your neuro. I didn't like the prednisone either, but it's supposed to help with the inflammation. Also, #1think positive and #2 get your rest and #3 take your fish/flax oil, and get some exercise if you can, walking or whatever. Hugs and prayers to you! Jill in Chicago - who's coming up on her 1 year TM anniversary in a few daysSharon Marsden [EMAIL PROTECTED] wrote:Hi everyone:My left leg is always my weaker leg. And I always have numbness and strange sensations. But yesterday morning my left foot started tingling in a different way with pins/needles. It was uncomfortable to step down, but not painful. Now it's spreading up my leg and is up to my upper thigh. I was dxed with Transverse Myelitis in 1997 (then MS dx came the next year). I just realized today that the left leg is reminding me of the beginning of my experience with Transverse Myelitis in 97. It is kind of like the feeling of a foot going to sleep but my leg is feeling draggy. Now my right foot is more numb than normal and is feeling stranger than normal. I thought about calling my neuro but he's 45 miles away and I don't want to go in to see him. And I don't want to be on solumedrol. I'm contrary, you know.Just wondering. hugs)))Sharon Sharon --from Arizona TM 1997 to MS 1998 It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant http://health.groups.yahoo.com/group/MSersLife/ www.greatamericanbeanbag.com
Re: [TMIC] November Birthdays
Happy Birthday November babies!![EMAIL PROTECTED] wrote: I can't believe it is November already! Happy Birthday to you all!(Please send any additons or corrections to tmic-list@eskimo.com).11-01-59 Ella ([EMAIL PROTECTED])11-03-60 Gina ([EMAIL PROTECTED]) 11-8 Diane ([EMAIL PROTECTED])11-12 Marie ([EMAIL PROTECTED])11/13/51 Kevin ([EMAIL PROTECTED])11-13-66 Lauren Bresse ([EMAIL PROTECTED])11-16 Sandra ([EMAIL PROTECTED])11-17-58 Becky [EMAIL PROTECTED]11/18/48 Drema ([EMAIL PROTECTED])11/20 Cossy ([EMAIL PROTECTED])11-21-29 Pearl Bernocchi ([EMAIL PROTECTED])11/22/51 Judy Hoops ([EMAIL PROTECTED])11/24/57 Cindy in Michigan ([EMAIL PROTECTED])11-25-44 Gunny ([EMAIL PROTECTED])11-27 Jack McMillan at [EMAIL PROTECTED]11-30-46 Louise Flagg ([EMAIL PROTECTED])www.greatamericanbeanbag.com
[TMIC] MRI is good
I want to thank everyone for their thoughts and prayers about the MRI yesterday. I couldn't wait til Monday and I found out the results today via my friend at work: 1) I have a brain 2) it has no lesions 3) it's unremarkable YAY!!! Now I can go to my halloween party and enjoy myself and have a cocktail to celebrate that at least. Jill in Chicago www.greatamericanbeanbag.com
[TMIC] 2nd annual MRI
Ok everyone, I had my 2nd annual MRI of my braintonight. The neuro said I really show signs (upon exam)of MS but let's hope it's negative. I'm a little nervous and I'm gonna be nosey and look up my results myself at work on Monday...Hopefully I won't faint at my desk. I have a tendency to do that with bad news. Luckily I work in a hospital I guess. Keep your fingers crossed. I pray for all of us every night. Jill in Chicagowww.greatamericanbeanbag.com
Re: [TMIC] OT - thanks
Bernie, Show off those pearly whites! For those who don't want to see you're smile...they can just delete. Sometimes we don't have a whole lot to smile about so go ahead and show it off I say. Jill in ChicagoBernard Pelow [EMAIL PROTECTED] wrote: Hey Folks, A while back I asked for help in getting my dentures. Those that could, sent what they could, and now I have good news! Tomorrow morning I am going to get fitted for them. So, special thanks to all of you who helped me to be able to achieve this. As soon as I can, I am going to get a picture taken of me and my new teeth, so those of you who want to see me with them, please send me a reply and I will send it to you personally. Don't want to bother the whole list with my grinning face! lol Once again, heart-felt thanks to all who helped.Peace,Berniewww.greatamericanbeanbag.com
Re: [TMIC] Not Devic's (MS)- then what???
You guys are describing exactly what I've been asking about...A pressure in my head that I can feel all over my head and in my ears and in the top of my throat/jaw. I even told my Dr. it feels like I have encephalitis without a headache! Like a big head and more off balance when this happens.Let's not forget...my TM and all these problems stems from a herpes/shingles virus. I have read that it is possible for it to spread to the spine and cause encephalitis. Hey why not..I've already had meningitis from it 2x. I think it will kill me if it happens again I swear. Jill in ChicagoBeverly Barr [EMAIL PROTECTED] wrote: I have the same question: is the increase pressure part of my active disease cycle? It makes sense, but I did not realize that the increased pressure could bother my vision after a while. My Dr. keeps asking me "how's your vision"...Bev From: "Sandy Heidel" [EMAIL PROTECTED]To: "Butcher, Bernie [SFS]" [EMAIL PROTECTED], "Beverly Barr" [EMAIL PROTECTED], tmic-list@eskimo.com, [EMAIL PROTECTED]Subject: Re: [TMIC] Not Devic's (MS)- then what???Date: Wed, 20 Sep 2006 10:33:43 -0500My last tap showed increased pressure. My neuro called it Pseudo Tumor Cerebri and said, "Well now we have something else to add to your list of rare neurological disorders." I said, " I am not looking to expand the list." He loves the diagnosis part of his job. I try to prevent him from using those skills any more than he has to. But it can evidently cause blindness and so I have to have my eyes checked for damage from the increased pressure on the retina. It can also cause headaches but I cant say that thats my case. I have migraines that come and go but they were here before the TM or the PTC.I am wondering now if an increase in pressure is part of the active disease cycle and if its common to TM or MSers when a tap is done during an attack? Sandy- Original Message - From: Butcher, Bernie [SFS] To: Beverly Barr ; tmic-list@eskimo.com ; [EMAIL PROTECTED] Sent: Wednesday, September 20, 2006 10:19 AM Subject: RE: [TMIC] Not Devic's (MS)- then what???They thought I had Hydrocephalus - too much fluid (?) - they had me on my feet 15 minutes after the spinal tap (they took 50cc) no improvement in my walkingBERNARD BUTCHERFrom: Beverly Barr [mailto:[EMAIL PROTECTED] Sent: Wednesday, September 20, 2006 10:48 AMTo: Butcher, Bernie [SFS]; tmic-list@eskimo.com; [EMAIL PROTECTED]Subject: RE: [TMIC] Not Devic's (MS)- then what??? Same here; inflammation and my fluid pressure was high (but I'm not sure what that means). Bev From: "Butcher, Bernie [SFS]" [EMAIL PROTECTED]To: "Beverly Barr" [EMAIL PROTECTED], tmic-list@eskimo.com, [EMAIL PROTECTED]Subject: RE: [TMIC] Not Devic's (MS)- then what???Date: Wed, 20 Sep 2006 08:04:49 -0400 The only thing they found from my spinal tap was evidence of inflammation (?)BERNARD BUTCHERFrom: Beverly Barr [mailto:[EMAIL PROTECTED] Sent: Tuesday, September 19, 2006 6:52 PMTo: tmic-list@eskimo.com; [EMAIL PROTECTED]Subject: [TMIC] Not Devic's (MS)- then what??? Last week I had the spinal tap and today I found out that the results were negative. Negative for MS I'm guessing. I have to wait until next week Tuesday in order to have a visit and sit down with my Dr. What does this all mean? That I most likely have Devic's and definately not MS?I need some answers so that I do not get overly weighed downed... I went to Cancun with my sister a two weeks ago. I left children and husband behind...I really needed to mope and think. My sister has Lupus and she was quite helpful on what to do when you are exhausted, tired or just not in the right frame of mind. While I was there, I believe I was very much affected by the hotweather. I was sick for two days, back, neck painand I even spiked a fever overnight and woke up with a fever blister on my lip. I had no appetite and I was a just wanting to sleep. I took some of my sister's 600mg ibuprofen for comfort. I typically, love and enjoy the warm weather. I love the feel of the sun on me and I just was a little disturbed that i did not feel well and was so drained on my vacation. Does the warm weather affect persons with Devic's in this mannter?? -I just received a call from my dr. that my antibody test from the Mayo Clinic was negative for Devic's disease. He previously ruled out MS based on my MRI scans, what then is plaguing me?It is possible to have Devic and have a negative testing for the particular antibody?Bev From: [EMAIL PROTECTED]To: [EMAIL PROTECTED], tmic-list@eskimo.comSubject: Re: [TMIC] subscribeDate: Thu, 31 Aug 2006 23:02:30 EDT You can correspond with all of the group by just writing using the original address that you used that I replied to. In case you do not still have it, the address is listed
Re: [TMIC] Re: Brain stuff or not
I'm confused too. I swear something is wrong w/ my jaw and my left side feels weaker and less sensation than the right. My lesion is at T10-11 why the hell am I feeling it in my left arm and jaw and neck and ears??? I see the neuro on 10/18 maybe something else is going on? Anyone else feel this. It sounds like only the MS'rs get this stuff?bobby jim hijar [EMAIL PROTECTED] wrote:Am not quite sure what recurring TM is a flare up...And I don't think it happens in a different part of the spine..(help me, guyze).
As I understand it, recurring MS is the same as recurring-relapsing MS. It is not a second attack if it's only an exhacerbation to a previous event (correct me if am wrong, y'all) but I believe that doesn't happen in MS, only TM. And then, it's the progressive MS that doesn't respond to most ABCs. But that's a horse of a whole different color.Rain and snow.. Already??? Yikes. It hit 32ºC earlier today down here. Damn.!!Bobberino in balmy ElvislandFrom: Heather Pieter To: bobby jim hijar ; [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Saturday, September 16, 2006 12:52 AM Subject: Re: Brain stuff or notHmm, then what about Recurring TM? Is that not a second attack in a different part of the
spine? I should read about it on the Forum website. Thanks Bobberino,Heather in Calgary (and yes we had some rain mixed with wet 'snow' flurries today - Yuck. From: bobby jim hijar To: Heather Pieter ; [EMAIL PROTECTED] ;
[EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, September 15, 2006 6:57 PM Subject: Re: Brain stuff or notWell, yes, from what I've heard as well, brain lesions are a sure reason for an MS dx.On the other hand, I was also told that once there is a second attack in a different part of the spine, the dx changes from single sclerosis (TM) to multiple (two or more) sclerosis. Ergo the change of dx.The change of dx didn't upset us one bit. It meant me missus qualified for the ABCs, and today, 325 injections later (I shudder at the 'real' cost), Da Boss is doing just fine, thankyew.;)Hang in there, y'all BobberinoFrom: Heather Pieter To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, September 15, 2006 1:25 PM Subject: Re: [TMIC] Re: (OT) Re: tmic-digest Digest V2006 #185I find it odd that if there are no lesions on your brain that the doctors have determined that you now have MS. I have been under the belief that lesions on the brain 'usually' is why the diagnosis changes from TM to MS.I have a sister 3 yrs younger than myself who has MS. Hers is the slow moving kind and she was officially diagnosed back in 1991 but feels she had it for many more years than that. In 1991 she had her second 'attack' and the MRI at that time found the brain
lesions which were not in her first MRI a few years prior to that.{{{ Hugs to you}}} and a listening ear from all of us.Heather in Calgary
Re: [TMIC] no emails
I've been getting them too. Some were sent individually to me and not to the whole group so I can't be sure what/if I missed anything.bobby jim hijar [EMAIL PROTECTED] wrote: I've received at least 23 messages since Thursday. I may have trashed others but I can't remember now..;)BobberinoFrom: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Saturday, September 09, 2006 9:00 AM Subject: [TMIC] no emailsHi, 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.
Re: [TMIC] increased symptoms
Margie, I've had increased symptoms lately BIGTIME. Mine usually get worse around that "time of the month" + I think the full moon doesn't help either. I'm about ready to go on some antidepressants but I'm trying to hold out. A little ativan here and there will hopefully do it. My mornings are the worst. I just feel overwhelmed and like I can't breath until the black cloud disappears at noon or soweird [EMAIL PROTECTED] wrote: Wow - has Patti hit it on the head for me. I just spent the last 3 days driving back and forth from Skokie (1 hr away) toget a new set of CLOSED MRI's. I'm very claustrophobic and this was a hugeleap for me. But with the help of some meds I did it!. I called the nuerocuz I too felt/feel like I've been getting worse. My balance and weakness arefor s--t. I'm to the point I don't go anywhere alone. And I actually havehad to use the cane my sister gave me even though I vowed never to use it. Ifelt if I used it I would be giving in to this stupid thing called tm.I just picked up the reports and there are no new spots and the old ones arenot "active". Good new cuz there's nothing new going on, bad cuz there'snothing they can do about it.I guess like Patti said, I have to slow down, sit down, stop pushing and startresting. (like that's going to be easy with 3 kids - 4 if you count a husband!).Also, how does one keep the stress level out of one's life? I don't do yoga,I quit praying a long time ago, I quit the health club cuz the pool is too faraway from the parking lot and I can't get there by myself, and I hate to keeppaying for something I'm not using, espeacially since my daughter is going offto college next year and I have to find out where 20-$30,000 is going to comefrom!!! I'm sorry I'm rambling, but like we've said before, NO ONE knows what itsliuke to live like this besides us. The tears are rolling down now - so Ibetter go.Thanks for listening.MargieOn Thu, 7 Sep 2006 7:07:09 -0700, pjv1234 wrote When I joined TMIC 3 years ago I begged for help with my memory problems. My memory is almost back to my pre TM days, but I still have the same lapses problems already described by others. My balance is better, afterall, I just bragged about riding a bicycle! This morning I bumped into the hallway wall and did the two steps forward, one step back schuffle on the way to the bathroom. I know why I wasn't concentrating on my trip down the hall, I was thinking about the laundry. Maybe my body thought it was the washing machine and was tumbling me around! I know that stress, fatigue, and lack of concentration cause memory lapses. I can't fake it. If the my body doesn't give me away, my mind will. I have slow down, sit down, stop pushing, and start resting. Patti - Michigan--WOW! Homepage (http://www.wowway.com)
Re: [TMIC]banding
I used to get the banding across the top and arch of my leftfoot as if I had an ankle brace on. I also would getaround on my left wrist.Krissy Z [EMAIL PROTECTED] wrote: My banding is usually my right leg, and some days better than others, the tightness around my ankle and knee...sometimes my calf, never really painful tho just tight like someone is gripping it tighlyor there is some weight around my ankleKrissy 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~ All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.
RE: [TMIC]banding
Does anyone get it in their arms or wrist like I do?Janet Dunn [EMAIL PROTECTED] wrote:I am so glad to hear of these accounts of banding. Mine is intense, and I often feel like I am so alone in this. You all have been aptly describing the feeling. At first I thought it was strained muscles, and have spent a fortune on Rolfing treatments to ease it off. (They didnt work) Thank you for sharing your experiences. Mine is on the right side, from the torso on down the leg, right to the foot.JanetFrom: Jill Z [mailto:[EMAIL PROTECTED] Sent: September 4, 2006 4:49 PMTo: Krissy Z; TM ListSubject: Re: [TMIC]bandingI used to get the banding across the top and arch of my leftfoot as if I had an ankle brace on. I also would getaround on my left wrist.Krissy Z [EMAIL PROTECTED] wrote: My banding is usually my right leg, and some days better than others, the tightness around my ankle and knee...sometimes my calf, never really painful tho just tight like someone is gripping it tighlyor there is some weight around my ankleKrissy 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~ All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.
RE: [TMIC] tm
Mine came on gradually also. I thought it was Cauda Equina Syndrome again like my dr. said the first time 2 yrs ago"Butcher, Bernie [SFS]" [EMAIL PROTECTED] wrote: I think mine came on gradually - when I thin back to what happened before I went totally numb, tingly and lame on my left side, there were some instances whereI think it may have been my spinal condition: walking wobbly, bumping into things, spilling coffee , klutzy kinda things.BERNARD BUTCHERFrom: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, August 31, 2006 3:35 PMTo: tmic-list@eskimo.comSubject: [TMIC] tmI notice that every thing refers to acute TM. Has anybody in the group had TM that has come on gradually. Everyone should read the link that Frank sent about GP's. There I guess is nothing we can do about this but we certainly should be informed. At a hospital here in Virginia who employs physicians unless they see patients in an allotted time the physician is asked to leave. Am afraid that this is becoming the norm and is certainly a poor way to practice good medicine.Ann in Virginia
RE: [TMIC] Fw: CAUSES OF TM --CHECK OUT THE RED HIGHLITES
I think I was on 900mg a day for a while and I swear I felt worse too! I think it made my condition worse. Especially since mine was caused by a virus and prednisone weakens your immune system..I think it made it worse. I'm ok for now though."Butcher, Bernie [SFS]" [EMAIL PROTECTED] wrote: Anyone ever get a massive dose of prednesone? This week I was given 3 days of IV steroids, 1,000mg/day, each morning 8/28, 29, 30. Now I feel awful Stiff,like, worse than before. ?BERNARD BUTCHERFrom: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, August 31, 2006 12:29 PMTo: [EMAIL PROTECTED]; [EMAIL PROTECTED]Cc: tmic-list@eskimo.comSubject: Re: [TMIC] Fw: CAUSES OF TM --CHECK OUT THE RED HIGHLITES?? didn't we already know this information? -Original Message-From: [EMAIL PROTECTED]To: [EMAIL PROTECTED]Cc: tmic-list@eskimo.comSent: Thu, 31 Aug 2006 10:42 AMSubject: [TMIC] Fw: CAUSES OF TM --CHECK OUT THE RED HIGHLITESMyelitis And Acute Transverse Myelitis Myelitis, or inflammation of the spinal cord, can result from several diseases. Poliomyelitis affects the cord's gray matter and produces motor dysfunction; leukomyelitis affects only the white matter and produces sensory dysfunction. These types of myelitis can attack any level of the spinal cord, causing partial destruction or scattered lesions. Acute transverse myelitis, which affects the entire thickness of the spinal cord, produces both motor and sensory dysfunctions. This form of myelitis, which has a rapid onset, is the most devastating.The prognosis depends on the severity of cord damage and prevention of complications. If spinal cord necrosis occurs, the prognosis for complete recovery is poor. Even without necrosis, residual neurologic deficits usually persist after recovery. Patients who develop spastic reflexes early in the course of the illness are more likely to recover than those who don't. Causes Acute transverse myelitis has a variety of causes. It often follows acute infectious diseases, such as measles or pneumonia (the inflammation occurs after the infection has subsided), and primary infections of the spinal cord itself, such as syphilis or acute disseminated encephalomyelitis. Acute transverse myelitis can accompany demyelinating diseases, such as acute multiple sclerosis, and inflammatory and necrotizing disorders of the spinal cord, such as hematomyelia. Certain toxic agents (carbon monoxide, lead, and arsenic) can cause a type of myelitis in which acute inflammation (followed by hemorrhage and possible necrosis) destroys the entire circumference (myelin, axis cylinders, and neurons) of the spinal cord. Other forms of myelitis may result from poliovirus, herpes zoster, herpesvirus B, or rabies virus; disorders that cause meningeal inflammation, such as syphilis, abscesses and other suppurative conditions, and tuberculosis; smallpox or polio vaccination; parasitic and fungal infections; and chronic adhesive arachnoiditis. Signs and symptoms In acute transverse myelitis, onset is rapid, with motor and sensory dysfunctions below the level of spinal cord damage appearing in 1 to 2 days. Patients with acute transverse myelitis develop flaccid paralysis of the legs (sometimes beginning in just one leg) with loss of sensory and sphincter functions. Such sensory loss may follow pain in the legs or trunk. Reflexes disappear in the early stages but may reappear later. The extent of damage depends on which level of the spinal cord is affected; transverse myelitis rarely involves the arms. If spinal cord damage is severe, it may cause shock (hypotension and hypothermia). Diagnosis A doctor will suspect transverse myelitis in any patient with a rapid onset of paralysis. Medical history, physical examination, brain and spinal cord scans, myelogram, spinal tap, and blood tests are used to rule out other neurological causes of symptoms, such as a tumor. If none of these tests suggest a cause for the symptoms, the patient is presumed to have transverse myelitis. Blood tests may be performed to rule out various disorders such as systemic lupus erythematosus, HIV infection, and vitamin B12 deficiency. In some patients with transverse myelitis, the cerebrospinal fluid that bathes the spinal cord and brain contains more protein than usual and an increased number of leukocytes (white blood cells), indicating possible infection. A spinal tap may be performed to obtain fluid to study these factors. Treatment No effective treatment exists for acute transverse myelitis. However, this condition requires appropriate treatment of any underlying infection. Some patients with postinfectious or multiple sclerosis-induced myelitis have received steroid therapy, but its benefits aren't clear.Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free.
[TMIC] Lipoma/hemangioma of the spine
Hi Everyone, Have any of you ever heard ofa lipoma or a hemangioma of the spine? One of my friends at work has this and has numbness in her arms, constant painand has memory problems etc. Sounds a little like us but her legs and bladder and bowles etc are fineJust thought I'd see if anyone is familiar with this too... Thanks, Jill in Chicago
[TMIC] Fwd: Article from the Chicago Sun-Times
Note: forwarded message attached.---BeginMessage--- The following article from the Chicago Sun-Times has been forwarded to you by [EMAIL PROTECTED] If you wish to stop receiving these articles, please contact the sender. Comments from the sender: To read the full story, click here: http://www.suntimes.com/output/news/cst-nws-clone07.html ---End Message---
[TMIC] 2 questions---1 for the ladies
I'm pretty new to the TM thing and seem to be making a good recovery so far but I was wondering if: #1 - Do any of the women notice their symptoms are a little worse before their periods or ovulation?#2 does anyone ever get a pressure like feeling in their head? It's not a headache but just feels like pressure? I have low blood pressure too by the way 110/60.I'm 35 yrs old and have a lesion at T11-12 Also, has anyone ever heard of these lesions going away??? Any advice would be appreciated. Thanks, Jill
