RE: [TMIC] No mail
Janice, I do. I want to move to Missouri and escape this place! Date: Wed, 28 Mar 2012 07:07:47 -0400 Subject: Re: [TMIC] No mail From: malugss...@gmail.com To: jan...@centurytel.net; molokai...@gmail.com; tmic-list@eskimo.com Well, OK; I'm still having spells of epileptic fits every few days. But I have discovered that sometimes I can get out of at least some of the weaker seizures by placing my mind on certain things. And if I am able to concentrate on those things then the spell is broken momentarily and I gain some control. This is a new and promising development in terms of clawing back some of my independence. But unfortunately, I am still at the whims of epileptic fits that could come anytime and anywhere the good thing is that in New York City here no one notices; the bad thing is that you will likely get robbed. Dalton From: Janice Nichols jan...@centurytel.net Date: Tue, 27 Mar 2012 22:29:12 -0500 To: James Berg molokai...@gmail.com, transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] No mail Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 27 Mar 2012 20:33:14 -0700 Hello James!!! I have been in Savannah for a couple of weeks.But, since my return I think it has been terribly quiet on this website.Nobody has anything to ask/talk about? Any improvements for anyone lately?What’s up? Janice from Missouri From: James Berg Sent: Tuesday, March 27, 2012 3:11 PMTo: transverse myelitis Subject: [TMIC] No mail Just checking if there is something wrong with my emailI have received nothing on the Tm site since March 14. Would somebody send me a Hi so I know you all are still there?
RE: [TMIC] No mail
Guys-It's weird, I have the same hand problems. The neurologist says it sounds like carpal tunnel. The ortho surgeon says it's not. I can type now, but couldn't 7 months ago. Still can't hold a pen much. EMG shows diffuse slowing of conduction to all nerves leading to the hands. The surgeon told me surgery wouldn't improve this. It's interesting that some days are better than others. I have also been trying the arthritis gloves which seem to help. The elbow pain at night is pretty bad though. CC: molokai...@gmail.com; tmic-list@eskimo.com From: skle...@cox.net Subject: Re: [TMIC] No mail Date: Wed, 28 Mar 2012 07:04:19 -0700 To: xbeecla...@gmail.com i don't know which came first tm or carpal tunnel! On Mar 27, 2012, at 3:22 PM, Elizabeth Clark wrote:Hi Susan,Just curious… was the carpal tunnel due to pre-TM issues or as a result of TM? After TM hit me, it left me with disfigured hands – I lost the ability of the tendons to bend or lift the fingers of my right hand. I had two surgeries where the doctor was able to make use of lesser tendons to take over for the damaged ones. One finger still doesn’t bend like normal and I have limited grip ability, but the end result is so much better than before the surgery. Hope your surgery was successful and your fingers will be able to fly over the keyboard. Betty(in –wet– Northern California) From: Susan Kleinz [mailto:skle...@cox.net] Sent: Tuesday, March 27, 2012 2:51 PM To: Roger Terese Pratt Cc: 'James Berg'; 'transverse myelitis' Subject: Re: [TMIC] No mail i am here, toosecond carpal tunnel surgery so one handed typing i am still listeningand thinking about everyone susan kleinz phx azOn Mar 27, 2012, at 2:14 PM, Roger Terese Pratt wrote: James, I thought maybe you had unsubscribed. Good to hear from you. We are all still out here, just some days are better than others and we don’t post that much anymore. Roger in Kennewick, WA From: James Berg [mailto:molokai...@gmail.com] Sent: Tuesday, March 27, 2012 1:12 PM To: transverse myelitis Subject: [TMIC] No mail Just checking if there is something wrong with my emailI have received nothing on the Tm site since March 14. Would somebody send me a Hi so I know you all are still there?
RE: [TMIC] Participation
Akua; I didn't even know you did art work. What kind of artwork? What's it like? Is there a picture anywhere? I would like to see. Pam Date: Wed, 28 Mar 2012 07:02:19 -0400 Subject: Re: [TMIC] Participation From: malugss...@gmail.com To: a...@artfarm.com; tmic-list@eskimo.com When I lived briefly in Malone, New York, up by Canada in Franklin County, even the able-bodied lived that way. It was said a person needed five trades and some land in order to make it financially because it was so poor there. Only a handful of very large dairy farmers were OK. And every spring might see a new parking lot carved out of the downtown, from someone who managed to burn down one of the remaining city blocks that past winter. Dalton From: a...@artfarm.com Date: Wed, 28 Mar 2012 02:04:36 -0400 To: tmic-list@eskimo.com Subject: [TMIC] Participation Resent-From: tmic-list@eskimo.com Resent-Date: Tue, 27 Mar 2012 23:08:40 -0700 Employment -- I was fired because of my disability….I was doing marketing and development. Then I taught, did readings and workshops but since returning home, I can do none of those thingsbecause there is no transportation. So I've turned to designing. I posted on Betterfly andnow have a private student who comes to my home. So those of you who can work are lucky to have situations that make that possible. In my part of the worldit's not only about *willingness* it is about access. In terms of my art making, I haven't entered work in any shows because I never get to see it/them ---for the five show I've been in since returning home, not once has anyone taken any pictures of the shows or my work on the walls. It's heartbreaking.
RE: [TMIC] No mail
Hello! I don't know about everyone else, but this strange weather fluctuations has been making it harder for me to sit and type at times. I did notice the drop in emails though. I thought it might be affecting others, also. Pam Date: Tue, 27 Mar 2012 10:11:59 -1000 From: molokai...@gmail.com To: tmic-list@eskimo.com Subject: [TMIC] No mail Just checking if there is something wrong with my emailI have received nothing on the Tm site since March 14. Would somebody send me a Hi so I know you all are still there?
RE: [TMIC] Handicap
I thought many disabled are unemployed, not the other way around. From: lbieh...@earthlink.net To: bgunny7...@aol.com; Tmic-list@eskimo.com Subject: Re: [TMIC] Handicap Date: Tue, 20 Mar 2012 22:18:36 -0400 Never heard that and don’t believe it, where did you hear it? From: bgunny7...@aol.com Sent: Tuesday, March 20, 2012 7:14 PM To: Tmic-list@eskimo.com Subject: [TMIC] Handicap Has anybody read where the unemployed are considered disabled? You gotta be shittin me.
RE: [TMIC] what do i do
Hey Bekki, I just want to add that their are a lot of doctors who refuse to use steroids still. If it's not in the computer data base as evidence based medicine, they will refuse to use it, especially some of the young ones. I've ran into this more than once. So, if you received a small dose, I wouldn't judge anything by that. The proof that it works is considered antedotal by the research guru's. This is a part of the new medicine that I find frustrating. I remember going into report one day and one of the seasoned nurses saying, we're trying this new treatment to stimulate the kidney in acute tubular necrosis. Guess what? It was the same treatment I had observed and administered for several years before moving out west. So it was actually and old treatment that hadn't been adequately documented in the evidence based computer programs. From: jan...@centurytel.net To: molokai...@gmail.com; bekk...@live.co.uk CC: tmic-list@eskimo.com Subject: Re: [TMIC] what do i do Date: Tue, 21 Feb 2012 18:49:52 -0600 Bekki, you apparently had a very light case. While I was in the hospital, one of my nurses told me of a friend of hers whose son contracted the disease. He was away in college and had a very severe flu that put him in the hospital.For 3-4 days he could not walk, then got his leg strength back. There are a few lucky ones that get hit with a really light case, just as there are those unlucky enough to have a severe case. Janice From: James Berg Sent: Tuesday, February 21, 2012 2:06 PM To: Bekki Briggs Cc: transverse myelitis Subject: Re: [TMIC] what do i do That is not really a lot of steriods. My IV steriods was for 6 days, with a new bag every eight hours-you are very lucky. I lost my legs, bladder and bowels in an eight hour period. I have been in a wheel chair ever since. My question is, was there someother treatment that 'cured' your symptoms? Jim On Mon, Feb 20, 2012 at 1:44 PM, Bekki Briggs bekk...@live.co.uk wrote: Hi, I've had TM for nearly 2 months now, I am pleased to say I'm nearly over it all, fingers crossed, I couldn't walk properly and had numbness all over except my head and face, I had 3 days of Iv steroids 30 mins each day. I would just like to say I admire how strong you are, everyone who has or has had TM, its very difficult to come to terms with but I was blessed with a loving girlfriend who helped me and pushed me to stay strong, glad u have the same, sorry for the essay lol Date: Sat, 18 Feb 2012 09:50:29 -1000 Subject: Re: [TMIC] what do i do From: molokai...@gmail.com To: malugss...@gmail.com CC: patticoole...@gmail.com; kandyd...@yahoo.com; tmic-list@eskimo.com Wow! Dalton really says it well. I was somewhat down this morning and then reading his email and remembering what you have been through, it pulled me up and I can move on today instead of feeling sorry for myself. What really got me was Dalton's reference to his wife and how she cares for him. I am very lucky to have a wife who also devotes herself to caring for me. for her it is a tough road to hoe because it has severely limited her life's activities. I too feel that this TM has been laid on me for a purpose and although I'm not sure what it is I keep trying to hold my head high and keep a smile on my face. I hope you can do the same. We all care about you and are here for you when you need us! Jim On Fri, Feb 17, 2012 at 12:21 PM, Dalton Garis malugss...@gmail.com wrote: HI CANDY; I have been following your story in this email system. You have been given a difficult row to hoe, as we used to say. I am convinced by what has happened to me and from hearing all these stories from others with T.M. That nothing happens without a purpose; and that we are being specialized spiritually and emotionally for a service of some kind. Others will watch us and take strength from our efforts to overcome our difficulties. I was dx-ed just over two years ago. Since then I have had to quit my job as associate professor of economics at an engineering school in the Middle East, because the one thing T.M. left me with besides the constant pain, is an anomaly from a lesion on the brainstem that causes partial complex seizures not controlled by medications. Now, I get many mild seizures, every couple of days or several per day. They keep me home now, but I can go out if someone goes with me to hold me up and take care of me if or when another spell comes. In spite of these difficulties, however, in some strange way my heart is at peace and happy. My dear angel of a wife takes such good care of me and is not upset when I become helpless for hours after a spell. I hope that you also will find some peace and inner happiness.
RE: [TMIC] Is it really so important to know?
Hello all; I agree with Celrod on this. I would like to know what causes things because of the reoccurance of symptoms after recovery for a while. I would like to prevent them. I also notice a tendancy to autoimmune type problems in the family tree. But, my only concern with cause is prevention of further problems because I do like what I do. Celrod, I've had the same problem with word finding and written communication during acute episodes. Neurologists will claim I'm depressed. But, the only time I feel depressed is when I can't work due to this stuff. When I'm working I feel great. And, it usually takes quite a bit of pain and prolonged periods of inactivity to get me down. So, I really do believe this is the cause of the depression, not the other way around. I am beginning that greens or hunter gatherer diet. It's not what I used to call hunter gatherer diet when we talked about diabetes prevention in native americans, but that was a long time ago, and it'll do. Pam From: jan...@centurytel.net To: celr...@aol.com; robthe...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Is it really so important to know? Date: Sun, 15 Jan 2012 22:56:07 -0600 Jane, This is really new to me - the fact that you have had so many episodes/attacks of TM, and then you are back to normal.I don’t know anything about your other disease, but I am sure you have checked it out. Hope someone will pop up here to talk to you about it and can empathize. Janice From: celr...@aol.com Sent: Sunday, January 15, 2012 3:19 PM To: robthe...@aol.com ; tmic-list@eskimo.com Subject: Re: [TMIC] Is it really so important to know? I was told I had TM on April 26, 1998 although I had been feeling numb and tingly in my leg and trunk since October. It was a slow onset. It is almost 14 years! Don't know why my immune system attacked me, but it did. I have had 6 episodes where I felt numb and tingly and the doctor put me back on steroids and it went away. Personally I think stress was a big factor in my attacks. I also have another immune disease-bulbous pempgoid. Now I am starting to ramble. It helps to talk to someone who knows what I am talking about and it did initially involve my brain because I could not think of the right words or write them. That has returned slowly. Jane/Splendora Tx In a message dated 1/15/2012 11:12:28 A.M. Central Standard Time, robthe...@aol.com writes: I have had TM for more than 14 years and I have gone to the best Doctors (Dr. Kerr). In this group as well as some of the other facebook groups there seems to be a preoccupation with trying to find the cause that brought TM into our lives. I certainly understand the importance of medical researchers looking for these answers but I don't understand why it is so important for us to have a definitive answer as to why we were unlucky enough to contact TM. I am a layman when it comes to our condition. I see my neuro twice a year basically for pain management. I do not waste my time trying to answer a question for which there is no answer. We were just unlucky enough to have hit the million to one lotterywhy us..was it stress, was it a flu shot, was it just a common cold that our immune system attacked improperly God only knows and try as we might how are we supposed to figure out the cause when none of our doctors have been able to? For me the most important things that a support group like ours can supply is the medications that have been sucessful, and or the doctors that we have confidence in. I like all of you pray for a curebut at my age (64) I pray it does not get worse and that new medications might make me feel better. Ok I am starting to ramble All the best to all! Rob in New Jersey
RE: [TMIC] we have a female child family member with TM symptoms
When I worked Neuro ICU, I was always told the difference between guillainbarre and TM was TM was descending from injury down and guillain barre was both ascending and descending. In other words, if you lost consciousness and were effected from the injury up, they called it guillain barre. Personally, I think some neurologist use the two diagnoses interchangably. At first, as with MS they said TM was often a symptom of the two diseases. People with both have TM. TM patients don't always have everything else. Now, with MRI's the existence of plaques and demylination is used. Many people recover from guillainbarre without residual. Many of them have the residual burning etc. So symptom wise, there isn't a lot of difference except for how the ascending area is effected. Winding up on a ventilator used to be almost hands down and diagnosis for guillain barre. Now, it isn't always. Some people on the vent are told they have TM. From: em...@telephonelady.com To: xbeecla...@gmail.com; celr...@aol.com; rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: RE: [TMIC] we have a female child family member with TM symptoms Date: Wed, 11 Jan 2012 15:39:55 -0500 http://www.bbc.co.uk/health/physical_health/conditions/guillainbarre1.shtml This website says that it isn’t inherited but genetics can play a part on who gets the disease…please read….. From: Emily [mailto:em...@telephonelady.com] Sent: Wednesday, January 11, 2012 3:33 PM To: 'Elizabeth Clark'; celr...@aol.com; rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: RE: [TMIC] we have a female child family member with TM symptoms How is it different from TM? From: Elizabeth Clark [mailto:xbeecla...@gmail.com] Sent: Wednesday, January 11, 2012 2:36 PM To: em...@telephonelady.com; celr...@aol.com; rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: RE: [TMIC] we have a female child family member with TM symptoms According to the buzz.com list of auto-immune diseases: Guillain-Barré Syndrome: It is an autoimmune disorder which affects the peripheral nervous system. It is normally initiated by some acute infection. The characteristic of this disease is the weakness which starts with the lower limbs and rapidly grows in the ascending order. In this disorder, failure of the respiratory system is of the highest concern, hence, the treatment mostly starts with the intubation of the patient. Once the patient is stable, the treatment mostly includes of immunoglobulins or plasmapheresis. From: Emily [mailto:em...@telephonelady.com] Sent: Wednesday, January 11, 2012 10:41 AM To: celr...@aol.com; rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: RE: [TMIC] we have a female child family member with TM symptoms With that many people in the same family….maybe all of you should be tested for Gillian B??? From: celr...@aol.com [mailto:celr...@aol.com] Sent: Wednesday, January 11, 2012 1:22 PM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] we have a female child family member with TM symptoms She is in my prayers. Jane/Splendora Tx In a message dated 1/11/2012 12:15:15 P.M. Central Standard Time, rj_ran...@yahoo.com writes: Mary woke up yesterday morning and could not raise up (sit up) or walk. She is at children's hospital. The onset sounds like TM. Mary is my mom's great niece and my 3rd cousin. I have not been able to talk with family members and found out through word of mouth. Mary's uncle, my 2nd cousin, was struck with similar event about the same time that I was hit with TM. But Adam was diagnosed with Gillian B. (can't spell that word and won't try). So we are concerned about the issue but I am concerned about the doctor's getting it right.
RE: [TMIC] we have a female child family member with TM symptoms
They also use immunoglobulins and pasmapheresis in TM patients when steroids don't work. No proof that they work yet, same as steroids, just it works for some and not for others, and some doctors are willing to give it a try when nothing else works. I prefer the doc who gives things a try myself. From: xbeecla...@gmail.com To: em...@telephonelady.com; celr...@aol.com; rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: RE: [TMIC] we have a female child family member with TM symptoms Date: Wed, 11 Jan 2012 11:35:49 -0800 According to the buzz.com list of auto-immune diseases: Guillain-Barré Syndrome: It is an autoimmune disorder which affects the peripheral nervous system. It is normally initiated by some acute infection. The characteristic of this disease is the weakness which starts with the lower limbs and rapidly grows in the ascending order. In this disorder, failure of the respiratory system is of the highest concern, hence, the treatment mostly starts with the intubation of the patient. Once the patient is stable, the treatment mostly includes of immunoglobulins or plasmapheresis. From: Emily [mailto:em...@telephonelady.com] Sent: Wednesday, January 11, 2012 10:41 AM To: celr...@aol.com; rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: RE: [TMIC] we have a female child family member with TM symptoms With that many people in the same family….maybe all of you should be tested for Gillian B??? From: celr...@aol.com [mailto:celr...@aol.com] Sent: Wednesday, January 11, 2012 1:22 PM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] we have a female child family member with TM symptoms She is in my prayers. Jane/Splendora Tx In a message dated 1/11/2012 12:15:15 P.M. Central Standard Time, rj_ran...@yahoo.com writes: Mary woke up yesterday morning and could not raise up (sit up) or walk. She is at children's hospital. The onset sounds like TM. Mary is my mom's great niece and my 3rd cousin. I have not been able to talk with family members and found out through word of mouth. Mary's uncle, my 2nd cousin, was struck with similar event about the same time that I was hit with TM. But Adam was diagnosed with Gillian B. (can't spell that word and won't try). So we are concerned about the issue but I am concerned about the doctor's getting it right.
RE: [TMIC] Extent of your TM? Pins and Needles
Jim, I could walk all along...but by holding my legs or joints stiff and swinging from the hip and I didn't get far. After steroids I was very weak, and couldn't tolerate any weight or get far for about 4 months. then I had a complete recovery over about a year except for occassional fatigue and spasming. In 2000, I lost it for 11 months and recovered over another year. I had progressive weakness starting about 2008 until August 2010 when I couldn't do anything let alone sit for more than an hour. I'm now getting around with orthotics and a brace for walking. But, I have a lot of muscle weakness and easily get pain aside from pins and needles, and burning with any exertion. Also, my hands and arms are now involved. But, I still get around pretty good if I can pace myself. Pam 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
RE: [TMIC] RE Pins and Needles
Patti; Which supplement were you taking? Pam Date: Sat, 31 Dec 2011 09:33:11 -0600 Subject: Re: [TMIC] RE Pins and Needles From: patticoole...@gmail.com To: molokai...@gmail.com CC: pjv1...@chartermi.net; tmic-list@eskimo.com James when I first got TM I ordered vitamin supplements for TM that came from India. After taking them for a few months, my doctor found that it was affecting my liver. They were concerned and were going to do a liver biopsy . I stopped taking the vitamins and when they did a secon dblood test they found my liver was back to normal and I didn't need the biopsynormal so I will never take things that are made in foreign countries. Patti - Wisconsin On Fri, Dec 30, 2011 at 3:05 PM, James Berg molokai...@gmail.com wrote: Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim On Wed, Dec 28, 2011 at 6:01 PM, pjv1...@chartermi.net wrote: Gerry, Many of us faced the same thing. Movement and feeling also brought the feeling of pins and needles. I've taken Lyrica for about three years - it helps a lot. I don't know about side effects except the cost can empty your wallet. I would have stuck with gabapentin, but it was unpredictable. Lyrica starts working witin 15 minutes. Gabapenten took an hour or two to work. The best pan reliever is laughter and the posts I read tonight relieved my pain for a while. The antidepressant, Cymbalta, might help with the pins and needles. Of course, it's another drug with a lot of side effects. Pati - Michigan
RE: [TMIC] re pins and needles
So far it is still legal in Oregon. I am aware though that people with addictions claim anything to get a script...and I'm not referring to anyone here who is looking for pain relief. As a result of the addictive stuff, I wouldn't be surprized if the government tried to put the kabash on it here. I believe MT is still getting away with it, too. There are side effects to MJ. Because it has been illegal for so long, it's been hard to document them though. Everything has side effects including sweet potato pie which would help my mood tremendously. CC: tmic-list@eskimo.com From: skle...@cox.net Subject: Re: [TMIC] re pins and needles Date: Tue, 27 Dec 2011 07:59:42 -0700 To: mingalett...@activ8.net.au okay, first time I have heard of MJ My neurologist wrote me a prescription for it!however, even though it was voted yes in Arizona, the Federal Government has put a stop on it.It works better than anything for me.And, it's true, alcohol is an analgesic and it definitely kills pain also.See you all at AA! just kidding.Susan Kleinz, PhxOn Dec 26, 2011, at 6:22 PM, Gillian Clark wrote:Dear pHran3quee, The most excellent advice as usual!!! I find that Scotch works nicely too. Seems to have less side effects than most meds too :) Of course, nothing really beats a bit of MJGilly- Original Message -From: frank@franksheldon.comTo: Gerry Surette ; tmic-list@eskimo.comSent: Tuesday, December 27, 2011 7:43 AMSubject: Re: [TMIC] re pins and needles my feet became unanalyzed recently I now experience pins and needles under my feet. is there anything that can be done to neutralize it? Gerry, I find that Bourbon works best to decrease pain and pins/needles. Bourbon mixed well with mint, but few medications. Happy Holidays. Oh, cutting your feet off actually intensifies the discomfort (phantom limb pain). Frank
RE: [TMIC] re pins and needles
Dalton; I think the back injury is probably more accountable for many of your symptoms than TM. Or maybe TM was a symptom of the back injury. Norco has reduced acetaminophen in it with hydrocodone, but there is still a little bit. lyrica didn't do anything for me. Neurontin or gaberpentin (sic) is predecessor or pregabulin Lyrica. And, there are a lot of people out there who develop nasty side effects with the stuff. I definitely doesn't work for everyone. But, the broken back fits into the category of what used to be called Causalgia or now reflex sympathetic dystrophy. And, that's a whole other animal. Date: Tue, 27 Dec 2011 07:51:59 -0800 From: jcs...@yahoo.com Subject: Re: [TMIC] re pins and needles To: malugss...@gmail.com; bpe...@austin.rr.com; tmic-list@eskimo.com I am truly thankful that we have a variety of things to work with. just read where possibly next year we will have hydrocodone without acetaminophen in it. it will have more hydrocodone but without the liver damage. From: Dalton Garis malugss...@gmail.com To: john snodgrass jcs...@yahoo.com; Bernie bpe...@austin.rr.com; TMIC tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 9:23 AM Subject: Re: [TMIC] re pins and needles John; Your point is well taken. I also had difficulty going on Lyrica, but I hung in there and continued with it because the pain under my skin all over my body gave me no choice. Before Lyrica, I could not sleep or work; I felt as though I were being fried with high amperages of electricity. I could only just lay there in awful pain. And since I had broken my back in an industrial accident which bent me backwards until I couldn't see below my chest, I have adjusted what I consider to be painful. The Lyrica killed the pain. As for getting off it, why would I do that? Its addiction is a mute point for me, since living pain-free is itself addictive; so that I would become immediately addicted to whatever removes this awful pain. Dalton(718) 838-0437 begin_of_the_skype_highlighting(718) 838-0437 end_of_the_skype_highlighting From: john snodgrass jcs...@yahoo.com Reply-To: john snodgrass jcs...@yahoo.com Date: Tue, 27 Dec 2011 04:52:09 -0800 (PST) To: Bernie bpe...@austin.rr.com, Dalton Garis malugss...@gmail.com, TMIC tmic-list@eskimo.com Subject: Re: [TMIC] re pins and needles I personally had no good experience with it. I had no bad experience with it. Just another one of those trials for me that didnt help out Somewhere I read where someone else loved it. From: Bernie bpe...@austin.rr.com To: Dalton Garis malugss...@gmail.com; TMIC tmic-list@eskimo.com Sent: Tuesday, December 27, 2011 6:25 AM Subject: Re: [TMIC] re pins and needles Not trying to scare off anyone considering taking this medication, but one has to be very careful with Lyrica, it has some very nasty side effects. Make sure your doctor starts you on a low dose and that you and your doctor monitor yourself very closely for these. Make a list of all of them and keep it handy. I was put on Lyrica and it made my life horrendous with a lot of misery until they could get me off of it. One also has to be weened off Lyrica, abrupt stopping of the taking of this medication can actually kill you. Here are a couple of links that tells you about Lyrica for you and your doctor to consider:: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH327/ http://en.wikipedia.org/wiki/Pregabalin
RE: [TMIC] re pins and needles
I have found comfrey oil helpful. Alcohol makes it worse. Kytta-Salbe f ointment is helpful. Baclofen doesn't do anything for me. Made me sleepy at first and helped with back spasm, but found more and ore was needed so what the heck, I don't want that. I don't do anything without orthotic supports in my shoes. Even a dress shoe for only a few minutes must have good support. I avoid uneven ground, and use hiking sticks if it it necessary since my ankles flip flop. I wear an ankle brace if I'm going to be on my feet much. And, I take requip every single night without fail. This doesn't get rid of it entirely, but it works better than anything else I've tried. Bottom line though, the more I walk or am up, the more I spasm and tingle and burn. If I don't get up, I don't live.Pam Date: Mon, 26 Dec 2011 13:29:35 -0800 From: jcs...@yahoo.com Subject: Re: [TMIC] re pins and needles To: write2ry...@gmail.com; tmic-list@eskimo.com my own experience was when i had the buzz in my feet,when i warmed them up it felt like they were sunburn. From: Ryota Nishino write2ry...@gmail.com To: tmic-list@eskimo.com Sent: Monday, December 26, 2011 4:21 PM Subject: Re: [TMIC] re pins and needles Hello Gerry and TMIC members, How about warming up your feet? In my experience warmth but not excessive heat can alleviate the conditions if not 'cure it' as such. Good luck. Let me know how you get on. Ryota On 27/12/11 9:18 AM, Gerry Surette wrote: my feet became unanalyzed recently I now experience pins and needles under my feet. is there anything that can be done to neutralize it?
RE: [TMIC] Re: Brain lock ?
Anyone tried either induced hypnosis or self hynosis? CC: tmic-list@eskimo.com From: skle...@cox.net Subject: Re: [TMIC] Re: Brain lock ? Date: Tue, 29 Nov 2011 18:58:38 -0700 To: a...@artfarm.com Yes, indeed. - if one can meditate. I just can't seem to learn it.Also, laying down doing dyaphramtic (spelling) breathing helps me with shooting neuropathic pains.I am so sorry you are in pain and paralyzed.Susan On Nov 29, 2011, at 6:00 PM, Akua wrote:Meditation: Try it again. Don't concentrate. Just breathe deeply, slowly in as quiet a place as you can find.Deep breathing has helped me manage pain. Akua who is paralyzed and in constant pain i reckon i traded meditation for medication,, sort of kills dedication and quickens procrastination on and on i ramble From: bobberino elbobber...@earthlink.net To: fr...@franksheldon.com; Dalton Garis malugss...@gmail.com; celr...@aol.com; TMIC-LIST@eskimo.com Sent: Monday, November 28, 2011 7:52 PM Subject: Re: [TMIC] Re: Brain lock ? Danggit..!!!I wish I could get my brain to slow down always going at fool speeed;) My brain is spinning so fast I offen forget what am doing, so engrossed on whatever spin da brain is doing. oh well I've tried meditation but I can't concentrate on that neither. BobbyJim in colder Elvisland --
RE: [TMIC] quiet ot
spasming used to keep me awake. Not so much anymore. I have vertigo which manifests as nausea sometimes. Only am problem was related to BIH which was from high protein related to TM plugging up my arachnoid villa (sorry, don't care about spelling tonight) or my brain so to speak. CC: jcs...@yahoo.com; celr...@aol.com; tmic-list@eskimo.com From: skle...@cox.net Subject: Re: [TMIC] quiet ot Date: Tue, 29 Nov 2011 18:54:28 -0700 To: jan...@centurytel.net Janice,Yes, I do. I'm actually supposed to take 10 mg of Baclofen every 6 hours.So, I try to keep it by my bed at night. Baclofen definitely can keep my spasms at bay, if I take it every 6 hours. Carpal tunnel on left hand keeps mebawake also, having surgery 1/12/12.On another fun note, one of my biggest problems in nausea, and vomiting if I don't get a Zofran pronto! ( always in the AM, like morning sickness)Anyone else have this? I have lost 17#... and struggle with a loss of appetite and cooking in general.I used to love to cook, and even cater. Susan, Phx, AZOn Nov 29, 2011, at 4:21 PM, Janice Nichols wrote: Susan, do you have break-through nights when the spasms keep you awake? JaniceFrom: john snodgrass Sent: Tuesday, November 29, 2011 4:15 PM To: Janice Nichols ; Susan Kleinz Cc: celr...@aol.com ; tmic Subject: Re: [TMIC] quiet ot i take 20 mg of baclofen at @ 5am,12pm, and 8 pm. at one point i was taking 100 mg per day. mfg. states that 80 should be the max dosage per day From: Janice Nichols jan...@centurytel.net To: Susan Kleinz skle...@cox.net Cc: celr...@aol.com; tmic tmic-list@eskimo.com Sent: Tuesday, November 29, 2011 1:02 PM Subject: Re: [TMIC] quiet ot Susan, I am taking your advice and not just taking it at nite too.It is helping. Thanks Janice From: Susan Kleinz Sent: Monday, November 28, 2011 6:32 PM To: Janice Nichols Cc: celr...@aol.com ; tmic Subject: Re: [TMIC] quiet ot Savella is a new drug designed to help people with fibro myalgia. It's purpose is to help neuropathic pain. It definitely works for me. For 20 years I took Baclofen at night only. I ended up taking way more than I do now, which is 10mg 3 - 4 times a day. My doctor, at BNI is a specialist in MS and TM. I am grateful for his care! Susan, Phx, AZ On Nov 28, 2011, at 4:20 PM, Janice Nichols wrote: Susan, I am on Baclofen, Neurontin, and Zoloft too. What do you take Savella for?Maybe I am missing out on something! You are right about the website.It has done wonders for me. Great for information and for handling the “isolated” feeling of TM. When I first joined, I had lots of questions that I asked everyone to respond to, and of course, they did.It kept things pretty active for a while, but things have slowed down again. It is a wonderful group- take a bow everyone of you!!! Janice From: Susan Kleinz Sent: Monday, November 28, 2011 10:33 AM To: celr...@aol.com Cc: tmic Subject: Re: [TMIC] quiet ot I was busy with Thanksgiving... My two lesions are at T-7, so I do not have the brain thing going on. My first episode, I did have slurred speech...as there is a 3rd lesion in my brain that doesn't seem to be activated now. I would take any drug that would help me. Ritalin included. I'm on Baclofen, Neurontin, Zoloft and Savella. I should be smiling all day long! I am grateful to this website. I joined the TM Association and received a bunch of good literature. Also ordered The Official Patient's Source Book on TM. I am amazed that my neurologist didn't recommend these resources.Nor did I know how rare this illness is... My husband says I'm one in a million. Susan K., Phoenix, AZ On Nov 28, 2011, at 7:10 AM, celr...@aol.com wrote: I hope everyone is ok. It has been very quiet on this site since before Thanksgiving or maybe I am kicked off again. Missing you. Jane/Splendora Tx
RE: [TMIC] Re: Brain lock ?
And all this time I thought it was just exhaustion. You guys sound luckyyou can take time out. These boys (or men judging by their age) don't let me get any rest. I guess that's part of the bipolar thing, but when you're running on empty it's pretty darn irritating. Date: Mon, 28 Nov 2011 10:39:41 -0800 From: jcs...@yahoo.com Subject: Re: [TMIC] Re: Brain lock ? To: fr...@franksheldon.com; malugss...@gmail.com; celr...@aol.com; TMIC-LIST@eskimo.com all joking aside,,mine is low on my spine yet i understand to some degree what you are saying,,I come to a point where everyone just has to leave me alone,,,literally because I cant make sense out of anything and i get like a biting dog From: fr...@franksheldon.com fr...@franksheldon.com To: Dalton Garis malugss...@gmail.com; celr...@aol.com; TMIC-LIST@eskimo.com Sent: Monday, November 28, 2011 9:53 AM Subject: [TMIC] Re: Brain lock ? Seriously, That does happen to me. I usually am able to sit down , before I fall down. My mind slowly shuts down. Too much data- can not compute, overloading occurring. I stay seated for several minutes, then I'm able to resume my activities. My GalPal used to take these events personally, but now she understands that she needs to help me by taking control, stop asking questions, Etc. My lesion is at C5-6 which is pretty high up the cord and may influence the Pons. I'd recommend googling Pons. It's a pretty interesting part of our brains. F
RE: [TMIC] Still here
I'm still here. I've just been trying to work this past month. This job will be over next week. But, it's hard for me to do anything else when I work. Today, I'm having a lot of trouble with my arms. Through the upper arm and shoulders is tingling and tight. And when I put my hands forward, they don't really want to work. It's sort of like the weirdness in my legs, I can feel it all the time, they're weak, but I can walk. Being in my shoulders like this is really new. Hands have been numb, but work for a few months now. I don't know what this is. MRI of cervical spine and repeat to the head next week. They've never shown anything before, but it's been 3 years. Date: Sat, 29 Oct 2011 14:12:30 -0400 Subject: Re: [TMIC] Still here From: malugss...@gmail.com To: gbthomas8...@sbcglobal.net; TMIC-list@eskimo.com Still here, too; What would I do without you guys and gals? Dalton From: Gary Thomas gbthomas8...@sbcglobal.net Date: Sat, 29 Oct 2011 14:02:36 -0400 To: TMIC list TMIC-list@eskimo.com Subject: [TMIC] Still here Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 29 Oct 2011 11:05:10 -0700 There has not been very many messages but I, for one, am still here. I haven't written much as I have been driven crazy applying for Medicaid for my mother who is in a nursing home with Alzheimer's. The Michigan Department of Human Services actually lost some paperwork and while we were thinking things were being processed NOTHING was being done and then we had to re-apply and get current financial information to them. Along with doing this I keep tabs on my dad who lives alone at age 86. My TM-related comment is that I am thankful I am still able to function to do all this above as my two siblings live out of town. The fatigue is my biggest factor but feel I need to keep moving and then deal with spasms by taking valium. Anyway, it has been quiet lately on the list, but maybe everyone is out raking leaves (or watching form the windows as the leaves fall from the trees)! Gary, in colorful Michigan
RE: [TMIC] shingles vaccine
Lynn and Dalton and john and all; My doctor in Michigan told me no immunizations. Here on the west coast, they say, there's no evidence to prove they cause problems. I took the shots 2 years ago...all of them they told me to. And, I've paid. I got sick again. Who knows if there's a connection. I don't want to take it again, but I don't want the flu either. I've seen so many people who had sores that looked like shingles, and burned like shingles, but since the viral swab didn't show shingles, the doctor told them there was no evidence of shinglesI'm not sold on much of anything anymore I guess. Date: Thu, 20 Oct 2011 06:01:24 -0700 From: lynnemye...@yahoo.com Subject: Re: [TMIC] shingles vaccine To: tmic-list@eskimo.com I have gotten shingles three times in the last few years, and to say the least it is miserable. But on the recommendation of many doctors over the years I do not get any vaccines. My TM was also idiopathic and the reason I was given was because they do not know what caused my TM I should not take any risks that could cause my immune system to go into overdrive again. Lynne --- On Thu, 10/20/11, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] shingles vaccine To: PAMELA S subers...@msn.com, pjv1...@chartermi.net pjv1...@chartermi.net, TMC Group tmic-list@eskimo.com Date: Thursday, October 20, 2011, 6:14 AM I have a weak mind, I hope all this information doesnt cause me to have shingles!! From: PAMELA S subers...@msn.com To: pjv1...@chartermi.net; TMC Group tmic-list@eskimo.com Sent: Thursday, October 20, 2011 1:37 AM Subject: RE: [TMIC] shingles vaccine You know...I'm not going to get this shot. But, shingles is what led to my mothers cardiomyapathy and congestive heart failure. Date: Wed, 19 Oct 2011 10:35:34 -0400 From: pjv1...@chartermi.net To: tmic-list@eskimo.com Subject: [TMIC] shingles vaccine Our local newspaper has a medical column in the Sunday edition by Dr. Anthony Komaroff. www.ask doctor k.com Sunday had a column titled shingles vaccine is a good idea for adults over 60. A healthy 65 year old woman asked - what is shingles and should I get the shingles vaccine. The doctor explained shingles and the vaccine. Here is a portion of the article. Getting the vaccine does not gurantee that you will noy get shingles. But it does reduce your chances by 50 percent or more. And it does an even better job of reducing your risk of postherpetic neuralgia. I've had patients worry that the vaccine itself could give them shingles. That's because the shingles vaccine is made with a weakened - not dead - form of the virus. And a tiny percentage of people do get either a shingles or chicken pox - like rash within a month or so of getting the vaccine. You may wonder if the risks associated with the shingles vaccine, though minimal, outweigh its benefits. And if we were only talking about shingles, you might be right. It's not pleasant, but most people get through shingles just fine. Postherpetic neuralgia is another story. It can last for months, even years, and be debilitating. The shingles vaccine can cut the risk of that happening by two thirds. And I'd say that tips the balance in favor getting the vaccine. I've voted with my feet. I got the vaccine, because I've seen too many of my patients suffer from postherpetic neuralgia. Chronic pain can disrupt a person's life (end of article) Jim,I think this is a question for a neurologist. Unfortunately, I haven't seen mine in three years so I cannot ask for you. I think it would be good of all our Tmers who are seeing a neuro to call and ask if the neuro votes yes or no for the vaccine and post the results for us. - Regarding the flu shot: I did not have a flu shot proir to my TM that was later lableled idiopathic - undetermined cause. I was also asked dozens of times during my hospitalization and rehab if I had had the flu shot thus determining that all medical personal thought the shot causes TM. Not so. Medical personnel asked if we had had the flu shot because they know the flu shot can cause various reactions and it is one of the many questions they ask a patient. The neuro who diagnosed me with TM asked if I had the flu shot during his first observation of me. I saw him for five years post TM and learned that he, his wife, and children received the flu shot annually. I asked my PCP in September why he didn't ask me if I wanted a flu shot. He said, Do you? I questioned if he takes one and he said he did not because he is not prone to getting the flu and he will not push them on his patients. That was the best answer I've received yet. I am not getting the flu shot. ---Patti - Michigan
RE: [TMIC] Does anyone know?
The first time I got TM I had Hep B vaccine series and a flu shot before onset. Second round of symptoms was after tetanus shot. This last flare up or reoccurance was that since I was a diabetic nurse working first line in the H1N1 epidemic I had H1N!. Then pneumovax because I was a diabetic. The following all it was tetanus shot because I kept scraping myself up outside without feeling it, then another flu shot when I thought I was going back to work. The rest is history. I didn't work for the next year. Didn't walk much either. First dr told me NO more vaccines Now they all say it's okay. Now, if a neuro named John Hopkins from Michigan...they seem to keep it in the family...says no more vaccines, but the young evidence based hot shots reading their computer screens sayall the evidence it might cause this is purely antedotalgo ahead and take them, and I get sicker than a dogwhat do you think I believe? Did I mention I had an insidious onset the first time. The kept telling me I was going to break out in shingles any day. Never happened. Just burned along every dermatone in my body from the bra strap down. I could've taken a felt tip marker and drawn this picture. Date: Tue, 18 Oct 2011 23:37:18 + From: kimharrison...@comcast.net To: molokai...@gmail.com CC: tmic-list@eskimo.com Subject: Re: [TMIC] Does anyone know? when I got TM 7 years ago it was in Oct and I had atleast 6 dr.s ask over and over if I had gotten a flu shot (i did NOT).. so that would tell me they suspect a flu shot can cause TM without comming right out and saying so... in the 7 years I have had TM, i have gotten the flu only once, kicked my butt for 3 days but less price to pay them something else worse happening.. my two cents don't do it From: James Berg molokai...@gmail.com To: tmic-list@eskimo.com Sent: Tuesday, October 18, 2011 6:09:34 PM Subject: [TMIC] Does anyone know? the neuro's who diagnosed my TM thought it may have been caused by a bout of Shingles I had. Two years have passed and my wife is worrying I might get another bout of shingles that would result in more TM damage. Should I get a Shingles vaccine shot or is that risking another attack of TM? The shot is $235.00 and we have been saing for it but now I am wondering what the risk is. Please contribute your knowledge. Jim
RE: [TMIC] shingles vaccine
You know...I'm not going to get this shot. But, shingles is what led to my mothers cardiomyapathy and congestive heart failure. Date: Wed, 19 Oct 2011 10:35:34 -0400 From: pjv1...@chartermi.net To: tmic-list@eskimo.com Subject: [TMIC] shingles vaccine Our local newspaper has a medical column in the Sunday edition by Dr. Anthony Komaroff. www.ask doctor k.com Sunday had a column titled shingles vaccine is a good idea for adults over 60. A healthy 65 year old woman asked - what is shingles and should I get the shingles vaccine. The doctor explained shingles and the vaccine. Here is a portion of the article. Getting the vaccine does not gurantee that you will noy get shingles. But it does reduce your chances by 50 percent or more. And it does an even better job of reducing your risk of postherpetic neuralgia. I've had patients worry that the vaccine itself could give them shingles. That's because the shingles vaccine is made with a weakened - not dead - form of the virus. And a tiny percentage of people do get either a shingles or chicken pox - like rash within a month or so of getting the vaccine. You may wonder if the risks associated with the shingles vaccine, though minimal, outweigh its benefits. And if we were only talking about shingles, you might be right. It's not pleasant, but most people get through shingles just fine. Postherpetic neuralgia is another story. It can last for months, even years, and be debilitating. The shingles vaccine can cut the risk of that happening by two thirds. And I'd say that tips the balance in favor getting the vaccine. I've voted with my feet. I got the vaccine, because I've seen too many of my patients suffer from postherpetic neuralgia. Chronic pain can disrupt a person's life (end of article) Jim,I think this is a question for a neurologist. Unfortunately, I haven't seen mine in three years so I cannot ask for you. I think it would be good of all our Tmers who are seeing a neuro to call and ask if the neuro votes yes or no for the vaccine and post the results for us. - Regarding the flu shot: I did not have a flu shot proir to my TM that was later lableled idiopathic - undetermined cause. I was also asked dozens of times during my hospitalization and rehab if I had had the flu shot thus determining that all medical personal thought the shot causes TM. Not so. Medical personnel asked if we had had the flu shot because they know the flu shot can cause various reactions and it is one of the many questions they ask a patient. The neuro who diagnosed me with TM asked if I had the flu shot during his first observation of me. I saw him for five years post TM and learned that he, his wife, and children received the flu shot annually. I asked my PCP in September why he didn't ask me if I wanted a flu shot. He said, Do you? I questioned if he takes one and he said he did not because he is not prone to getting the flu and he will not push them on his patients. That was the best answer I've received yet. I am not getting the flu shot. ---Patti - Michigan
RE: [TMIC] is it too early? (off topic)
And find me a nice guy while you all are at it. Date: Sat, 15 Oct 2011 19:35:20 -0700 From: pkeen...@yahoo.com Subject: Re: [TMIC] is it too early? (off topic) To: tmic-list@eskimo.com; rumc...@hotmail.com Go for it! I think you are lucky to have someone who will go out with you, despite any disabilities you have. (I don't mean that the way it sounds, lol) My advice would be to concentrate on her, not yourself. Don't tell her sob stories about your divorce and illness. Relax and enjoy yourself! Have a wonderful day! Priscilla From: kimharrison...@comcast.net kimharrison...@comcast.net To: j dunn j.d...@shaw.ca Cc: Jeron Rampersad rumc...@hotmail.com; tmic-list@eskimo.com Sent: Friday, October 14, 2011 10:55 PM Subject: Re: [TMIC] is it too early? (off topic) life as we know it is to short we don't know what tomorrow brings.. so go for it.. live it up! enjoy !!! you deserve it! From: j dunn j.d...@shaw.ca To: Jeron Rampersad rumc...@hotmail.com, tmic-list@eskimo.com Sent: Friday, October 14, 2011 9:20:41 PM Subject: Re: [TMIC] is it too early? (off topic) Hello Jeron Yes sirree bob, you go, you go and have a great time. If you have spoken at great length - then the homework is done, and the party can begin. Have a great time! Janet - From: Jeron Rampersad Sent: Friday, October 14, 2011 11:42 AM To: tmic-list@eskimo.com Subject: [TMIC] is it too early? (off topic) Hey guys, I need some advice. Most of you would remember my wife leaving me in April of this year. Since then I've found acceptance of my lonliness and it really was not too bad. Anyway, some 2 months ago I met up an old friend from way back and well, let's just say sometimes life just has a way of hooking 2 people up. My problem is I'm going away with her this weekend to a resort on the island of Tobago for her birthday. I'm kind of wondering if I'm ready to spend a weekend with someone alone. Haven't thought about that since my separation/divorce. What if I start having real feelings for her? What if she wants more out of this relationship after this weekend, even though we spoke about it at lenght. I was really honest with her from the get go, suppose honesty becomes my downfall? Should I be scared guys? or should I just go and have funforget TM/fibromyalgia/vasculitis for a weekend and enjoy the company of a woman who I might like? Regards, Jeron
RE: [TMIC] How can a spouse help?
Hello Andrea; I know you are going to get lots of responses. I just lost the person who was my partner to death. However; I had been married before, and he didn't tolerate my problems well. Yes, people do look at you and say, but you look healthy. I've had this problem since 1992, with two subsequent episodes or flares that were debilitating. Yet, each time I went back to work at a certain point as an RN. You don't mention what your husband is trying. It sounds like he gets around. I always got to where I could walk again, but it was very fatiguing. And, the fatigue has never went away. Nor has the pain from the tight banding to the burning and tingling with frequent stabbing pains here and there. Anger...it happens to me if I take gaberpantin or Neuronitn. I've been told a lot of people have this reaction. Depression. It is so common with TM, I have a heck of a time convincing neurologists I'm not depressed. I really liked Cymbalta but I can't tolerate it or Lyrica due to my diabetes. But, it works really good for those who can tolerate it. Celexa or Lexapro helps a lot with my trouble concentrating and remembering things. I got to where I couldn't sleep. And, the twitching and jerking and inability to get comfortable can play havoc on ones sex life. Requip was the answer for me. I don't twitch near as bad. I used to take baclofen but it didn't work after a while. I take Vicodin for the burning in my feet. Sheets drive me nuts. And, with this last episode CPAP became necessary. Believe it or not, being able to breathe at night really improved my mood swings. It had never occurred to me that not breathing at night was a problem. I'm not that big. nuvigil gets me going in the day, but the physical fatigue remains. Cramping and charlie horse every night if I've been active for, I guess it's going on 20 years. But, if I can sleep good, it doesn't get on my nerves so bad. Bending, reaching under things, getting things from under the bed, make me dizzy. Dizzy equals sick or very irritable for me. I didn't realize that this was influencing me to avoid certain activities for awhile. Bottom line is there are some alternatives, but you probably have to be proactive. I've heard can't do anything and live with it or at least you're walking and you can squeeze and push on neuro checks from many doctors. And, that is frustrating for someone who is in constant pain and has no energy. (Vertigo is a miserable way to be, too.) But, finally, I have found something that works for me. And, it is a big relief. If I understood you right, you said 6 months. I have all three times saw changes at about 1 year. Hang in there. It is hard. You need a way to sound off and release frustration. Caregivers can become ill, too. Please look out for yourself. Pam Date: Mon, 10 Oct 2011 14:38:19 +0100 From: and...@cleverendeavours.co.uk To: tmic-list@eskimo.com Subject: [TMIC] How can a spouse help? Dear TM support group, My husband became ill with TM in May 2011 and his symptoms have remained constant. He is in extreme pain from his chest down to his toes. The pain can be burning, tingling, icy, stabbing… He is now saying that he wants to end his life because he can no longer endure the suffering. He says that I am no help and do not understand what he is going through. This is correct. I do not understand. Because he looks normal, it is easy to forget that he is in constant pain. This is why I went online to see if I can find a group that does understand and can possibly provide hope for him. I realise there is no guarantee that the symptoms will go away, but after reading your online stories, it looks like it can be possible. Additionally, what can a spouse do to provide more support? He has had the symptoms for almost 6 months and every day plays like a broken record. I ask every day how he is and he unleashes a long list of painful symptoms. Besides taking his meds, is there any other therapy I can arrange for him that may provide relief? I feel useless. He is angry that I am not doing more, but I do not know what I can do besides taking care of the home and kids without burdening him with additional tasks. Any advice would be greatly appreciated. Warm regards, Andrea
RE: [TMIC] Pyrrhic Victory?
Looking through the human services stuff, it seems a lot of stuff is geared towards developmental disability, deafness, blindness, and homelessness. For people who become disabled, most of the resources are geared toward putting them back to work. Or helping them focus on being independent on their own. I'm not finding a lot of exceptions for folks who can't become independent with their disability. What makes the difference in a quad or para and a child who was born with CP? I'm not sure I get it. Does the governor have ombudsmen? This seems to be an oversight. Date: Sat, 8 Oct 2011 09:30:25 -0400 From: pjv1...@chartermi.net To: subers...@msn.com CC: jcs...@yahoo.com; a...@artfarm.com; tmic-list@eskimo.com Subject: RE: [TMIC] Pyrrhic Victory? I have those same thoughts when I read the things Akua goes thru day to day. I remember the first time I went grocery shopping after TM. My 76 year old (at the time) Mom took me and a 9 year old boy carried the bags from the car to the house. I would do your grocery shopping if I lived near you. Akua, have you contacted a local church? Most people don't know where to find an individual who needs a helping hand. See if you local paper would start a column of people in need. Not financial, but physical labor needs. The paper might run it in their want ad columns free of charge to the person seeking help as a charitable endavor. Patti - Michigan On Thu, Oct 6, 2011 at 8:38 PM, PAMELA S wrote: No kidding! Akua; if I lived close by I would vacuum your floor. I can do that now. Pam ___ Date: Thu, 6 Oct 2011 04:39:41 -0700 From: jcs...@yahoo.com Subject: Re: [TMIC] Pyrrhic Victory? To: a...@artfarm.com; tmic-list@eskimo.com it is a sad thing that this is done in regulated areas as well as unregulated areas in our lives. this is the very mindset that has brought our country to the embarrassing financial situation we are in.waste,fraud,,greed greed greed. and we the people suffer loss of what would be good service because of it,and in the economical way we have to go we need service. service is costly but if it is a good service and done with dignity it doesn't matter what type of service,it adds quality to all our lives. the Christian bible has a book tagged proverbs and it is full of service suggestions that win every single time. Prosper and live long Akua,,I understand your struggle. Be it implied,imposed,self imposed,or whatever a struggle is a struggle and everyone doesn't look for the good of his fellow citizen. spread some honey out when ever you can,,it attracts worker bees. crap just attracts biting flies. God knows i have had the flies! ___ From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Thursday, October 6, 2011 1:32 AM Subject: [TMIC] Pyrrhic Victory? I have an aide come once a week for two hours. I would like more time and more help as those two hours are spent grocery shopping, so I get no help around the house. But I can't afford more. The Home Health Care agency charges $25 an hour for her and I was fortunate to be granted a subsidy from United Way, so I only have to pay half. But that's still $25 a week additional for groceries. They had a nurse come every six months. This I never understood, as she either harassed my aide and made me lose part of the precious two hours as she asked inane questions, or she came and asked me to show her my care plan. The last time the nurse was here in the spring, she insulted and threatened me. I swore she would not enter my house again and I wrote a letter about what occurred, but decided against sending it. Two weeks ago the nurse called me, and in her usual rude and cavalier way,left a message telling me told me she would be over the next day. I called and said would not be available. Then i called the agency and said that I did not want anymore dealings with this person and could they please find someone else to send. The head of the agency said they only had one person to do this. I said i didn't understand why this had to be done... why was a nurse necessary? I reminded her that i had used their services for 3 years now, that i was very happy with my aide, but was not going to voluntarily submit myself to insult and distress. The head went on to try to persuade me/dissuade me by telling me that their one other nurse covered another territory. To which i had nothing to say. This was their requirement and it made no sense to me. This week she called me and left a message saying call her. I really dislike messages that don't have information and when i returned the call-- 90 minutes later, she was to be out of the office for the next two days. I was directed to the second in command who said that i was going to be reclassified. Reclassified? I said i have one person, once a week, for two hours who goes shopping. Well i would
RE: [TMIC] Pyrrhic Victory?
No kidding! Akua; if I lived close by I would vacuum your floor. I can do that now. Pam Date: Thu, 6 Oct 2011 04:39:41 -0700 From: jcs...@yahoo.com Subject: Re: [TMIC] Pyrrhic Victory? To: a...@artfarm.com; tmic-list@eskimo.com it is a sad thing that this is done in regulated areas as well as unregulated areas in our lives. this is the very mindset that has brought our country to the embarrassing financial situation we are in.waste,fraud,,greed greed greed. and we the people suffer loss of what would be good service because of it,and in the economical way we have to go we need service. service is costly but if it is a good service and done with dignity it doesn't matter what type of service,it adds quality to all our lives. the Christian bible has a book tagged proverbs and it is full of service suggestions that win every single time. Prosper and live long Akua,,I understand your struggle. Be it implied,imposed,self imposed,or whatever a struggle is a struggle and everyone doesn't look for the good of his fellow citizen. spread some honey out when ever you can,,it attracts worker bees. crap just attracts biting flies. God knows i have had the flies! From: Akua a...@artfarm.com To: tmic-list@eskimo.com Sent: Thursday, October 6, 2011 1:32 AM Subject: [TMIC] Pyrrhic Victory? I have an aide come once a week for two hours. I would like more time and more help as those two hours are spent grocery shopping, so I get no help around the house. But I can't afford more. The Home Health Care agency charges $25 an hour for her and I was fortunate to be granted a subsidy from United Way, so I only have to pay half. But that's still $25 a week additional for groceries. They had a nurse come every six months. This I never understood, as she either harassed my aide and made me lose part of the precious two hours as she asked inane questions, or she came and asked me to show her my care plan. The last time the nurse was here in the spring, she insulted and threatened me. I swore she would not enter my house again and I wrote a letter about what occurred, but decided against sending it. Two weeks ago the nurse called me, and in her usual rude and cavalier way,left a message telling me told me she would be over the next day. I called and said would not be available. Then i called the agency and said that I did not want anymore dealings with this person and could they please find someone else to send. The head of the agency said they only had one person to do this. I said i didn't understand why this had to be done... why was a nurse necessary? I reminded her that i had used their services for 3 years now, that i was very happy with my aide, but was not going to voluntarily submit myself to insult and distress. The head went on to try to persuade me/dissuade me by telling me that their one other nurse covered another territory. To which i had nothing to say. This was their requirement and it made no sense to me. This week she called me and left a message saying call her. I really dislike messages that don't have information and when i returned the call-- 90 minutes later, she was to be out of the office for the next two days. I was directed to the second in command who said that i was going to be reclassified. Reclassified? I said i have one person, once a week, for two hours who goes shopping. Well i would be reclassified so that a nurse wouldn't have to come. I said nothing. Since getting TM i find it hard to follow illogic and agree with it. But on further reflection I think they got money that i didn't pay for having a nurse attributed to my account and perhaps United Way picked up the tab, to the tune of $75/hour and they were able to continue with this subtle fraud until I refused to have the nurse come harass me again. But that's 3 years of unnecessary nonservice and easy money for that firm. It's a dirty shame. I'm glad i didn't cave on this. Akua --
RE: [TMIC] Facebook
Hey everybody; I've done this site on and off since the beginning. I do like the facebook thing. I like the quick banter when I'm going nuts for social stimulation. I've just taken a temporary job as a school nurse. They needed someone fast and they agreed to try and accomodate me, but it is only 6 weeks. I'm about to collapse before the end of the day. I do need the money because my disability insurance has fought tooth and toenail to not pay. When I walk in the halls, my feet spasm, my legs get charlie horses all night, and in the am, I have a heck of a time with the stairs. But, when it's all said and done, I really love this job. It is so exhilirating working with these kids. Pam CC: patticoole...@gmail.com; robthe...@aol.com; pjv1...@chartermi.net; tmic-list@eskimo.com From: malugss...@gmail.com Subject: Re: [TMIC] Facebook Date: Wed, 5 Oct 2011 20:32:10 -0400 To: xbeecla...@gmail.com Same for me; Just had another attack today likeEpilepsy because my lesion is on the brainstem so extreme joy or stress will give me a fit. Can someone explain how to get on disability? Dalton GarisNew York, New York On Oct 5, 2011, at 2:29 PM, Elizabeth Clark xbeecla...@gmail.com wrote: I am totally with you Patti… After completing my rehab (one month), I returned to work part-time. I lasted two and a half months. At the end of each day, I hurt so bad I couldn’t do anything - even cook dinner. And it took the entire weekend to recuperate from the exhaustion in order to start the next week. That meant turning down almost every offer to do anything fun. I finally gave in and went out on permanent disability. I so miss the social interaction afforded by working, but I don’t miss the forced exertion. To keep from becoming almost a hermit confined to the house – which is so easy to do when you don’t work – I make a point of ‘scheduling’ things to go out and do during the week – even if it’s just to grab a bite to eat for lunch or check out a new sale. After 34 years of working (31 for the same company), it was very hard to let go of the people contacts… it’s so easy at work to be ‘involved’ in co-workers lives just thru office conversation. It’s not ‘convenient’ for them after you’re gone. I try to stay in occasional e-mail contact with several of them, but it’s just not the same. TM definitely adversely affects your personal life as well as your physical one. I think that’s why we feel so connected to each other on this site – we all sympathize and appreciate each other’s losses as we’ve all walked in each other’s shoes where TM is concerned. Loss of health, loss of jobs, loss of friends, loss of dignity. It tears away at one’s resolve, but this site affords us a non-aggressive format for social contact (albeit thru cyber space), appreciation and validation of aches, pains and fears, and a way to gain knowledge about our condition thru the experiences of others. I thank everyone on this site for helping me get thru the worst of my times and teaching me how to accept and move on with what I do have. You’re all an inspiration! Betty (in Northern California) From: pat cooley [mailto:patticoole...@gmail.com] Sent: Wednesday, October 05, 2011 7:55 AM To: Robert Pall Cc: pjv1...@chartermi.net; tmic-list@eskimo.com Subject: Re: [TMIC] Facebook Robert you are much braver than I could ever be. Just the thought of heights makes me sick to my stomach. I did work part-time before TM and after about 7 months I was able to go make to my part-time job. It was exhausting at times but I enjoyed the people contact. Last year we moved about 120 miles away to be near my daughter and her family for my health. I didn't seek work after we moved. I don't miss working but do miss the people contact. Patti - Wisconsin On Wed, Oct 5, 2011 at 9:39 AM, Robert Pall robthe...@aol.com wrote: Good for youpeople do not realize how much we go thru to accomplish even the simplest of things! All the best! Rob in New Jersey -Original Message- From: pjv1234 pjv1...@chartermi.net To: Robert Pall robthe...@aol.com Cc: tmic-list tmic-list@eskimo.com Sent: Tue, Oct 4, 2011 10:37 pm Subject: RE: [TMIC] Facebook Congratulations on your retirement. I know I've said it before, but I can't imagine working while having TM. I think skydiving is the ultimate gutsy thing to try. I'm not that gutsy, however, I went white water rafteing this spring and found it to be exilerating. Patti On Tue, Oct 4, 2011 at 11:11 AM, Robert Pall wrote: I have not been around here for awhile. I stopped working in Februuary and neveer changed my email address until yesterday. I have been on Facebook which has a TM group and there are a lot of people on it from this group. I was confused but now I am not and I am glad to be back where I started. By the way to celebrate my 764th birthday and
RE: [TMIC] enough!
Okay, it's my hands and my feet and my legs!But, I got so sick of being called crazy when I tried to describe it. 20 years later it still drives me nuts, and I don't drink, I'm not using morphine etc. etc. etc. I Do wish caregivers had to experience just one hour of it. FYI...if you ever have to have a psych exam just to get a neurologist to take you seriouslymake sure you keep the record, or 7 years later you'll see the shrink again just to get the new resident whatever to take you seriously. I learned that the hard way. Wasting hard earned money to get someone to sign a paper saying those spiders ARE NOT in your head! Perhaps raid in the neurologist coffee:) (That is a joke, not a threat just in case someone should think otherwise) But, anyone who has lived with these sensations knows what I mean. Date: Tue, 12 Apr 2011 14:13:56 -0700 From: jcs...@yahoo.com Subject: RE: [TMIC] enough! To: vgor...@twmi.rr.com CC: tmic-list@eskimo.com even knowing whats going on I'm always rubbing and looking. --- On Tue, 4/12/11, vernon vgor...@twmi.rr.com wrote: From: vernon vgor...@twmi.rr.com Subject: RE: [TMIC] enough! To: 'john snodgrass' jcs...@yahoo.com Date: Tuesday, April 12, 2011, 5:10 PM That’s the way my hands feel From: john snodgrass [mailto:jcs...@yahoo.com] Sent: Tuesday, April 12, 2011 3:43 PM To: transverse myelitis Subject: [TMIC] enough! my legs are creping me out today ,one feels like it has spider webs on it and the other feels like bugs are crawling on it! TM,gotta love it,, NOT!
RE: [TMIC] Awful Care again.
Hello all; I've been quiet but reading folks posts. Too tired last few months to keep up with much. But, I really want to reiterate this. There is a state board in each state for RN's. Professional conduct is a rule despite what the employing organization might tell them to do. If they receive complaints on an RN from more than one patient and there is a trend, they do investigate that RN. I don't really know who oversees CNA's, but they are now required to have certification, too. Having been on both the providers end of things and the receivers end of things, I wouldn't hesitate to write the state board, my state senator, or any other certifying agency for health care I could find. I do know that when I sound angry, (which I'm usually not, it just takes too much effort to do things sometimes,) they don't listen too good. But, if we don't complain in some constructive way, the problems are never going to be fixed. That said.the health care system drives me NUTS Date: Wed, 30 Mar 2011 00:33:15 -0400 To: tmic-list@eskimo.com From: a...@artfarm.com Subject: [TMIC] Awful Care again. Well you asked. I'd been quiet because I'm barely holding on. I've been 'buked and I've been scorned as the song goes. And i had to take it. I have no recourse. The letter in progress: Nurse S. invited me to send a letter to the Board of Directors. As she said this twice during the rancorous and upsetting visit she made to my home. The nurse insulted demeaned and threatened me. This after she asked if i had any concerns and i told her how i was left without food at Christmas time. My aids car broke down. HHS did not offer me any other aid or any assistance.. If i had a private relationship with my aid, then i could have rescheduled or found some other time. As my relationship is with HH service and HHS did not work for any accommodation, offered no assistance. She told me tersely (insultingly) that it is my responsibility to care for myself. She told me that if I did not like HHS, then perhaps our relationship should be terminated. She said she felt uncomfortable about me using the services. That you have 300 clients and there are others you serve who are in wheelchairs ( i didnt understand what this was supposed to indicate) This conversation took place while my HHS aide was out shopping for me. I've said nothing but praise for my aide, which i reiterated. Well how could I like my aide yet not like HHS she asked? I reminded her that she had solicited my concerns, I had not begun the conversation. I guess it was foolish to answer the trick question. I was invited to express concerns and then brow beaten and punished for it. I was told that the reason no accommodation would be sought for me was because all the other aides weretoo stupid. These are not words that I have ever used. I've expressed frustration that my shopping list for Wegmans, a computer print out with pictures as well as words, indicating amounts and with a running total could not be followed by several of the substitute people sent. One woman brought back two bananas when the list said 4 pounds. The total dollar amount for this was around $2. This signified she understood little of what was explained to her about the list, the money before she went shopping. I described this as functional illiteracy Another aide could not complete the list (about $70 worth of groceries) in the two hours allotted -- a task which takes my usual aide about an hour. I don't understand why there is so much victim blaming in her and your organization's point of view. I use you because I need help. I am paralyzed and in a wheelchair. If i could shop for myself, I would. I used to in Rochester where there was paratransit and here, for the few months that a a once a week bus was availalble, but as there is no paratransit in Corning and no grocery delivery services, I cant. There are things I cant reach, light bulbs that need changing.. When I asked about the other aide for whom I had praise -- S -- she told me that S has left HHS. __ That's where i left the letter, which i will not send until or unless I can find someone else to shop for me or if they dump me. Now you know i thought i was picking my battles. I've never ever ever complained about my aide -- though she's left me up shit's creek without a paddle more than once. But she is the BEST of a crap pile. This woman went off on me because i DARED to say anything was wrong. Bad Nurse said the problem was that the only day i was available was Monday! I said I've NEVER said that, in fact I hate Mondays, I always lose service because of holidays and three day weekends. I've only said I can only do afternoons. She said well that's my problem.l And i said - you cant grind me down any smaller than i am, I am disabled and can't be dressed and ready any faster than I can empty my bladder, do my bowel
RE: [TMIC] REHAB
Patti; In this day and age, you should always feel free to complain. Transperency is now required for all hospitals. The patient and their family needs to say something when they see such things. I know that I would want to know if I were the nurse taking care of that patient. Many nurses are grateful that others will step in and help in maintaining a patients privacy. Often when such things happen, the nurse is tied up in an emergency with another patient. Sometimes they are careless. And, I for one would prefer that the careless ones are weeded out. Pam From: patticoole...@gmail.com To: a...@artfarm.com; tmic-list@eskimo.com Subject: RE: [TMIC] REHAB Date: Tue, 4 Jan 2011 11:41:16 -0600 Your experience sounds like a time spent in HELL. It is unfortunate that there are so many places like that in this country. People who have family or friends that can monitor their care are the lucky ones. Even hospitals lack proper care at times. I remember when my husband was in the hospital for colon surgery and when I was walking down the hall to the restroom, I noticed a patient in bed completely naked and no curtain was closed. They were trying to reach behind them to pull up a sheet. I complained to my husband’s doctor but was afraid that if I complained to the nursing staff my husband’s care would suffer. I now realize that I should have said something more. But when you are dealing with cancer surgery you aren’t thinking right. Patti - Wisconsin From: Akua [mailto:a...@artfarm.com] Sent: Monday, January 03, 2011 6:50 PM To: tmic-list@eskimo.com Subject: [TMIC] REHAB The closest I came to hell on earth was in rehab. I was allowed to fall twice. I was given the wrong meds daily for nearly two months, I was insulted and demeaned. I remember the nurse entering my room and finding me crying -- I was in awful electric pain --- and she told me I shouldn't be crying. She often brought he son to work. I wrote her about her gross insensitivity and she apologized. I worked hard to learn how to use the sliding board to get in and out of bed-- it was so so hard, and frightening, because an idiot had let me fall, but this mainly because if you couldn't get up, you wouldn't be attended to. Now that I'm home, I understand one of the basic challenges the idiot didn't address-- the wheelchair slides on a polished, linoleum floor. I have a bathmat with grips by my bed now, so my wheelchair, doesn't slide. this is just one of a zillion things they could have taught or worked on or shared or presented to or for me and didn't. And this was rehab, to ready me for life on my own as a paraplegic: worthless. One of the friends I made there was immobile without assistance, although unlike me, she was not paralyzed. She was left on her bedpan for an hour. I had passed aides chatting at the station, ignoring her buzzer, as i wheeled down the hall to see her. I wrote the board and management and met with management. I met with the dietitian twice, who quit about a month after i left. She told me that she was unable to get me the food that with restore my health ( fresh fruit and vegtables, fish, whole grain breads, baked potatoes). I kept in touch with several friends I made there who were still there when I left, because we all knew the importance of having people call. Only the cleaning staff helped. They advocated and interceded. I'll never forget one man who came and prayed for and over me. An investigation began when I and several other patients lost over 50 pounds. The few visits I had, folks brought food. Staff ate or discarded my (good) food. So, while I don't know about the hip pain, I can relate to the soul pain of being in a nursing home. It was like being in prison. There was a courtyard allegedly for getting air--- the door was always locked. I was awakened, whenever they felt like it, seldom consistently. Hellish to be awakened at 5 a.m. to have blood drawn by unskilled phlebotomists. Privacy was seldom observed I remember always asking for doors or curtains to be closed. If Cindy needs calls, I'm more than willing. all other things being equal, being in a nursing home is awful. Akua-- http://www.healrecover.blogspot.com http://www.akualezli.blogspot.com When I despair, I remember that all through history the way of truth and love has always won. There have been tyrants and murderers and for a time they seem invincible but in the end, they always fall - think of it, always. Mohandas Gandhi
RE: [TMIC] REHAB
I would like all of you to put locations for these homes so the rest of us can avoid them for ourselve and families. I don't want to be in one like this. Pam Date: Tue, 4 Jan 2011 10:28:13 -1000 Subject: Re: [TMIC] REHAB From: molokai...@gmail.com To: a...@artfarm.com CC: tmic-list@eskimo.com Are all rehabs the same? I was charged $1600/day and treated like cattle. On Mon, Jan 3, 2011 at 2:49 PM, Akua a...@artfarm.com wrote: The closest I came to hell on earth was in rehab. I was allowed to fall twice. I was given the wrong meds daily for nearly two months, I was insulted and demeaned. I remember the nurse entering my room and finding me crying -- I was in awful electric pain --- and she told me I shouldn't be crying. She often brought he son to work. I wrote her about her gross insensitivity and she apologized. I worked hard to learn how to use the sliding board to get in and out of bed-- it was so so hard, and frightening, because an idiot had let me fall, but this mainly because if you couldn't get up, you wouldn't be attended to. Now that I'm home, I understand one of the basic challenges the idiot didn't address-- the wheelchair slides on a polished, linoleum floor. I have a bathmat with grips by my bed now, so my wheelchair, doesn't slide. this is just one of a zillion things they could have taught or worked on or shared or presented to or for me and didn't. And this was rehab, to ready me for life on my own as a paraplegic: worthless. One of the friends I made there was immobile without assistance, although unlike me, she was not paralyzed. She was left on her bedpan for an hour. I had passed aides chatting at the station, ignoring her buzzer, as i wheeled down the hall to see her. I wrote the board and management and met with management. I met with the dietitian twice, who quit about a month after i left. She told me that she was unable to get me the food that with restore my health ( fresh fruit and vegtables, fish, whole grain breads, baked potatoes). I kept in touch with several friends I made there who were still there when I left, because we all knew the importance of having people call. Only the cleaning staff helped. They advocated and interceded. I'll never forget one man who came and prayed for and over me. An investigation began when I and several other patients lost over 50 pounds. The few visits I had, folks brought food. Staff ate or discarded my (good) food. So, while I don't know about the hip pain, I can relate to the soul pain of being in a nursing home. It was like being in prison. There was a courtyard allegedly for getting air--- the door was always locked. I was awakened, whenever they felt like it, seldom consistently. Hellish to be awakened at 5 a.m. to have blood drawn by unskilled phlebotomists. Privacy was seldom observed I remember always asking for doors or curtains to be closed. If Cindy needs calls, I'm more than willing. all other things being equal, being in a nursing home is awful. Akua-- http://www.healrecover.blogspot.com http://www.akualezli.blogspot.com When I despair, I remember that all through history the way of truth and love has always won. There have been tyrants and murderers and for a time they seem invincible but in the end, they always fall - think of it, always. Mohandas Gandhi
RE: [TMIC] Stem Cell treatment
You know, on my last job we had a lot of stem cell transplants for Cancer. They only came to my unit when there were complications. I know there is a lot of hope held out for this treatment, but some of the things I have seen with the complications have been horrible. When it doesn't work quite right and the graft versus host disease goes too far after the transplant.well, there is still a lot to discover and solve in this arena. Even if I had $100,000, I don't know how fast I would run to the doctor for this. I suspect the folks who have complications pay more than this. I am indeed more fortunate in that I am mobile. But these transplants scare me. Pam Date: Wed, 29 Dec 2010 19:29:31 -0500 To: tmic-list@eskimo.com From: a...@artfarm.com Subject: Re: [TMIC] Stem Cell treatment The lesson to me is less about caution and more about money. If I had $100,000 grand I would have THREE ways to walk tomorrow. sigh. So I now know I'm paralyzed because I'm poor. I notice this other article when I was reading the article about the quadriplegic injured in the accident that was treated with bone marrow stem cells. I think we would all be wise to proceed with an abundance of caution if we plan to seek any kind of treatment.Cody in Austin http://www.cnn.com/2009/HEALTH/07/14/stem.cell.regenocyte/index.html --
RE: [TMIC] A Bad Fall
I've fallen down the stairs several times these past few years. But, I count my blessings I'm able to go down the stairs. My hips are constantly bruised where I fall into things, but I am so lucky I am walking there in the first place. My PT gets aggrevated at me for doing too much, and my insurance company thinks I should do more. I'm not to good at decisions, friends. Chiropractors have been the ones who have given me the most relief, too. Date: Thu, 30 Dec 2010 11:01:06 -0800 From: toddtm2...@sbcglobal.net Subject: Fw: RE: [TMIC] A Bad Fall To: tmic-list@eskimo.com I too had a bad fall, when I was trying to sit on the floor. I was trying a new short cut, going from standing with my walker to straight to the floor without sitting in a chair first then going down to the floor. So don't try this at home or anywhere else. lol I let my chiropractor know that my left shoulder blade was hurting, so he followed that point to my spine and snapped back in one of my ribs. This was a week before Christmas, so it did make for a great Christmas gift. So please be very safe everyone, Todd in CC,TX --- On Thu, 12/30/10, wim from holland wim_from_holl...@hotmail.com wrote: From: wim from holland wim_from_holl...@hotmail.com Subject: RE: [TMIC] To: jan...@centurytel.net, TMIC tmic-list@eskimo.com Date: Thursday, December 30, 2010, 7:31 AM Janice Normaly I could say, just fine, not better or worse. After all this time it was very study. But last summer I overstreched my hamstrings by a fall. A very stupid one, sitting on the bed I reached too far for clothes on the floor and slide from the bed. I jused after that time my wheelchair all the day, because standing and walking with crutches was too painfull. Now after recovering, it is hard to get back to what I could do before. I hope in summer when we go to Spain I can get it back in the warm sun and dayly in the swimming pool. Wim From: jan...@centurytel.net To: wim_from_holl...@hotmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Date: Mon, 27 Dec 2010 10:31:41 -0600 Wim, it is great hearing from you again!How are you doing – besides learning to be grandparents. Janice From: wim from holland Sent: Monday, December 27, 2010 9:03 AM To: TMIC Subject: [TMIC] Gelukkig Nieuwjaar!! Happy new year everybody, hopefully this will be the year that makes an end to TM, and if not, don't give up hope and keep the head up. Last two years were very strange. We become grandparents, but we also became orphans this year. Next year our second grand child will be born. Wim from Holland.
[TMIC] Where is that research link?
Someone posted a link a couple of months ago for some research done in England about TM linked to autoimmune disease. I can't find it. Can someone reshoot that link for me? Please? Pam
RE: [TMIC] Med Question
I take neurontin on and off since 92 (another name for gabapentin.) I got used to it and it doesn't make me tired, but it was less effective over time.I get tired just from activity. And, I'm determined to stay active. It's just became harder and harder. Alot of diabetics I have cared for take it too for the burning. Most of them really resent coming to the hospital and missing a dose, but they don't seem to get sleepy from it any more either. From: jan...@centurytel.net To: cakal...@embarqmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] Med Questionb Date: Sat, 4 Dec 2010 22:37:03 -0600 Patti, I also have been on gabapentin for 4 years now.I take 2 after breakfast, 2 at lunch, and 2 at dinner, 300 mg each = 1800mg. Started it in the hospital, so would not have been able to tell if it made me sleepy or not to start with.They had me take added amounts very slowly and I really didn’t notice anything.I am always tired, probably because of gabapentin, baclofen (at bedtime), and just having TM. I push myself pretty hard, but also give myself rest time. Give your body time to adjust to the gabapentin and then decide whether to take it or not.I feel I am being helped by it. Janice From: CANDIS KALLEY Sent: Saturday, December 04, 2010 9:55 AM To: tmic-list Subject: Re: [TMIC] Med Question Patti, I've been on gabapentin for awhile now. It does seem to help with the cold/burning in the feet along with several other things. It doesn't however take everything completely away all the time or even sometimes! There doesn't seem to be anything that does that! TM is worst than the weather in that if you don't like it stick around it can get worse! The gabapentin does seem to make me more drowsy no matter when or how I take it! I take 300 mg 3X daily! To prevent even worse afternoons, I take 300 mg in a.m. and 600 mg at bedtime! I must admit that the night sleep seems to be better! Within 30 minutes, I'm fast asleep and usually sleep 7 hrs straight thru! Sometimes this is bad because the bladder relaxes too much and in the morning I have to change the bed! TM in a way takes us all back to a 2nd childhood - learning to walk, toddling and falling, wearing diapers, changing clothes 2 or 3X daily, and changing beding in the morning! If it wasn't for all the pain, I'd feel like a 1 year old! Always wanted to do it over again but I had imagined starting back in the teens - I'd give TM up in heartbeat for a REAL BAD case of acne anyday! 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: Patricia Cooley patticoole...@gmail.com To: TMIC-LIST@eskimo.com Sent: Saturday, December 4, 2010 10:39:58 AM Subject: [TMIC] Med Question On Thursday I saw a new doctor, a physiatrist (sp), that my neuro recommended. I am very impressed with him and his care which was very thorough. When I mentioned my freezing/burning and pain n my feet, he gave me a script for gabapentin. My previous neuro always said there was nothing I could take. I know many of who have mentioned it previously. I took my first capsule last night when I went to bed. This morning I feel so groggy, like I had a night on the town last night. Is that common? Will it go away after I am on it for a while? Maybe I should take it earlier in the evening so the affect wears off by morning. He has also recommend that I saw a ortho who will evaluate me to see if a brace on my bad leg would help with my balance and walking. If it helps, I am game for anything. Thank you in advance for any advice you can give me. Patti - Wisconsin
RE: [TMIC] LTD IME - HELP
The majority of people I've known who see an IME receive a decision that they are perfectly capable of working full time unless they are obviously incapacitatedd in a wheel chair. They work for the insurance company. I'm a little cynical on the subject. Talk to an attorney. Date: Fri, 3 Dec 2010 20:20:14 -0500 From: cakal...@embarqmail.com To: tmic-list@eskimo.com Subject: Re: [TMIC] LTD IME - HELP An IME is an Independent Medical Exam carried out by a doctor paid by the insurance usually! Which makes Independent a REAL LAUGH! 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: James Berg molokai...@gmail.com To: CANDIS KALLEY cakal...@embarqmail.com Sent: Friday, December 3, 2010 8:05:32 PM Subject: Re: [TMIC] LTD IME - HELP I wish I knew what an IME was--surely not MRI? I really feel for the paper'legal problems you are having. sounds like the Neuro may not be a real Neuro at all! I managed to get thru SSDI and it only took six months. I know I am lucky because others have been fighting for a year or more and still waiting. And their condition is the same. I was prepared to get a lawyer and fight but it wasn't necessary. Wish I could help, we have enough problems without rip off insurance co.s and neuros. Where I live, I can't find a neuro who has ever had a TM patient. Stand Strong. On Thu, Dec 2, 2010 at 7:26 AM, CANDIS KALLEY cakal...@embarqmail.com wrote: After 31 months, I'm finally scheduled for an IME for my LTD on the 16th of this month! My question is for anyone who has gone through an IME. What can I expect? This NEURO assigned for the IME is board certified BUT he owns his own Neuro Center which does nothing but Workers Comp and other insurance Independent neuro exams - LOL! While he attended college in some neuro fields, I can't find where he received a degree in neurology! He did, however, attended several months of training for insurance medical examinations and receive creditials! This is a BIG case with almost $50,000 past due from Insurance and another $60,000 to the end of the end of LTD. Warning for all you newbies - if you have STD/LTD through your employers, after 2 years the insurance company will TRY to discontinue payments due to a law for mental cases! That law does not apply for physcial conditions EVEN though the insurance companies will do anything they can to NOT pay! At the beginning, I suggest that you look up a GOOD LTD lawyer and call to be prepared for problems especially after 2 years! Laws are changing all the time and the insurance Also, TELL your doctor not to send any papers to ANY ONE without telling you and letting you review BEFORE sending out the papers! Have a BIG note put on your case file to that effect! MY Neuro answered papers that allowed only YES/NO answers at the height of Season here in SW FL! Since this is mainly a retirement town, and most of his patients are on Medicare Already, he answered the YES/NO WITHOUT further explanation and sent back to insurance without my knowledge! ALWAYS before, the insurance company sent forms to me for me and the doctor to fill out. I would always have to drop off the papers and pick them up to send back. BUT to get rid of me, the insurance company sent papers directly to my doctor and none to me - not even a notice! The last set of papers was just 6 weeks after the quarterly review papers! LIKE a MIRACLE would occur after 2 1/2 years of severe TM in just 6 weeks - 2 attacks of TM affecting C4 - T1 and T10 - T12! Just a word of warning to all newer TMers! SSDI is bad enough but the LTD insurance companies are the WORST !%!$#$!#@ OF ALL! 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.
[TMIC] EMG
Happy Thanksgiving: I have a question for everyone. How has the EMG test results (if you had one done) correlate with the weakness and discomfort for you? Pam
[TMIC] cpap
Hello; When reading James post, I thought maybe I should ask everybody about this. I now use cpap at night. I only knew I wasn't sleeping because of the pain in my legs. I knew that when I fell asleep jerking or something would wake me up in a few minutes. So I went for a sleep study. They found that I have a rhythmic pain in my legs every 20 seconds or so, that I have some weird arousal thing in my eeg waveforms way above normal indicating pain, and that I have some type of unexplained airway thing that responds to cpap. I do have a short neck, but the usual causes aren't really present. So, they started me on cpap. Weird thing was, I took to it right off. Still have some bad nights, and apparently some weird abnormalities, but I sleep without waking up gasping for air. ( My oxygen saturation was reallly dropping when I slept.) The really weird thing is, that I now can tell it's harder to breath when I take the thing off in the morning, and then I feel normal after feeling like I'm working hard with it off. So, my thought is, that maybe anyone with an higher involvement of the TM might benefit from a sleep study. I really am wondering if it is weak thoracic muscles causing my problem. I do know that sleeping is GREAT. Pam
[TMIC] Hello all, about me
Hello John; In answer to your question, I was diagnosed in 1992 with pretty good recovery except a straight catheter and extreme fatigue with any viral infection. A few years ago I started getting weaker. In 2000 I had trouble with BIH from the high protein in my spinal fluid. Now all of the sudden I'm weak as a kitten and can hardly get around. The initial hit was between my shoulder blades. My arms weren't effected at first, but they now are. I've continued to work with intermittant leave until last August. This they call Latent TM. I was told in the beginning, once I got well, it would probably stay away. I still have the feeling that there is a fist gripping between my shoulder blades frequently, but the weakness is worse than it's ever been. I'm barely walking, but I am walking. I fall alot. Since 1992 some doctors have learned about tm but many I've used have no idea. I was actually laughed at once for the burning sensation. I said give me a felt marker. I'll mark where it burns, and you will find a dermatone diagram standing in front of you. My biggest issue now is how to adjust to disability. I still have a mortgage over my head. I am a nurse who was working 12 hour shifts on her feet. My only problem was young nurses making fun when a foot dragged or I seemed to be tiring out. Today, I barely make it to 2 in the afternoon before it hurts to hold my head up. PT kills me. The tiniest exercizes and I can't do anything for 2 days without pain. Somehow this doesn't feel latent to me. I need all the advice I can get, especially on disability issues and lifestyle transitions.
FW: [TMIC] burning spine
From: subers...@msn.com To: jcs...@yahoo.com Subject: RE: [TMIC] burning spine Date: Sun, 31 Oct 2010 15:06:57 -0700 Hello John; I am new to this site, but I feel the burning. I also feel it around my rib cage along dermatones. As a result, when I fist had the transverse myelitis, my doctors thought I was breaking out with shingles. But, I never got the shingle sores. After it quit burning it itched like crazy. I've had so many doctors tell me they didn't know what this was until recently. So I thought maybe it wasn't that common. Date: Sat, 30 Oct 2010 15:50:38 -0700 From: jcs...@yahoo.com To: tmic-list@eskimo.com Subject: [TMIC] burning spine anybody ever feel a burning sensation in their spine? we have talked about the legs and feet and things but this burning in my spine may be the muscle at the spine but it sure feels like it is in it. sometime i feel the sensation you felt when they done the spinal tap. sickening.
