Re: [TMIC] Newly Diagnosed/Mild case
Rick, Just be certain that you're not overdoing the potassium, or anything else for that matter, getting any of that screwed up is as bad, if not worse, than not taking it..in other words let your doctoer know these things you'e doing and keep up regular lab check-ups... Just my 2¢ , from experience...janh Stillwater, OK
Re: [TMIC] Newly Diagnosed/Mild case
I'll eat as many banana's as I have to keep my potassium levels normal. I had a potassium drip once in the hospital and it was so painful and lasted about 3 hours. I don't think I have had a procedure that hurt so bad. My potassium level was so low I was in danger of cardiac problems. Never, ever again!!! Keep those bananas and potatoes coming. Cindy Subject: Re: [TMIC] Newly Diagnosed/Mild case Can a person get too much potassium from one banana per day? I liked that Rick obtained his potassium from a natural source. Patti, What I was trying to communicate was: Most people can not get too much potassium. Lack of Potassium is much more damaging and is very common in people on diuretics. The only way to do damage, in most people, is to take a 25 ml. syringe, fill it with a KCL (Potassium) solution, stick the needle in a person's vein ( the neck veins work best) and quickly empty the syringe. This, quite likely, will cause cardiac problems, even a heart attack, and perhaps death. There was a serial killer who used this. He was a nurse working with geriatric populations. He moved around the East Coast for a number years. Potato Skins have much more potassium than bananas, so, how about baked potatoes for dinner?? If you have any questions, write Frank
[TMIC] Newly Diagnosed/Mild case
I am newly diagnosed with TM; had the typical girdling symptom at onset. Received Solumedrol/prednisone course. Two months out, I have constant myelopathy (burning, painful skin tenderness) in both thighs and intermittent symptoms aggravated by sitting: I get substantial pain across my lower lumbar area and down my legs and my legs get extremely heavy. My gait is somewhat compromised when these symptoms present. I am also more fatigued than pre-TM Are these common TM complaints? I am thankful that these are my only residual symptoms but I am hoping for more improvement. But I am wondering if theres anything I can do to HELP them improvelike supplements (omega-3 fish oil, Neurosol) or exercise??? I would appreciate any thoughts Karen
Re: [TMIC] Newly Diagnosed/Mild case
Your symptoms sound familiar.especially the fatigueit's major and you need to listen to your body when it says it's tired, stop and rest!! or other symptoms seem to magnify!! Exerciserehab if possible.your doctor can presribe the rehabit is most helpful.especially early on so you can learn what you can and can't do.then you can work on that on your own Sorry you had to join our group..but glad you found us...you're welcome to ask any thing that you wonder about.someone here will understand what you mean..no two of us are alike/nor do we all share the same symptoms, etc.. Again, welcome! janh Stilwater, OK
Re: [TMIC] Newly Diagnosed/Mild case
Welcome aboard, Karen! We wish you didn't have to join the TM club, but you'll find it's a very supportive group. Have you looked over www.myelitis.org? It's got a wealth of info there, and you'll find that your symptoms are typical post-acute TM. You'll also find that once you talk to your neurologist to make sure nothing new is going on, there are some medications that may help with the discomfort. Vitamins and OTC meds have not, to my knowledge, been shown to help. If they have been, tested and shown to help, you'll find out about it on the website. All there is to know about TM is posted there. Exercise is very important to maintain mobility, balance, strength. It is also difficult because you'll find you fatigue and the muscles just won't work. It's different than working through a muscle tiredness. So you must learn to gauge how much to push yourself. But, to quote the TV personality, "You Can DO IT!" Don't doubt it. Besides the muscle fatigue, there is the just plain TM fatigue. To walk across the room is a major undertaking. I understand! It's not all in your head...and incidentally, there is a depression that goes along with TM, so if you are feeling that, there may be more to it than just "Oh my gosh this is awful!" It too can be helped with meds. Again, you'll find this discussed on the website. Keep in close contact with your doc! It's not that pills are the ultimate answer to all; but the physical damage to the myelin sheath causes the myelopathy, and meds can help the resultant pain and "heaviness". and fatigue. Most importantly, listen to your body. If it's time to rest, it's time to rest! You will likely find that people will not have a clue about how to respond to you and your symptoms; TM is a rare disease; we should all play the lottery! You can tell others that you have "MS of the spine" . You know TM is typically one spot, but saying MS will make people think that they know what to expect. Both sets of syjmptoms are similar, because of myelin destruction in the spine. I also used to say I had "single sclerosis." I'm not meaning to say that you'll go back to the way you were pre-TM. However, we have found that we can experience improvements in our symptoms over a time of months and even years. Much depends on a positive attitude and a willingness to keep working on things. We've found laughter helps a LOT! You'll find that this group will help a lot with THAT! So again, welcome to the clan! Feel free to share, ask any questions you like. While we do not all have the same symptoms, chances are that someone will have had some symptom like yours. Sam (girl-type) in snowy Boston Karen Doyle wrote: I am newly diagnosed with TM; had the typical girdling symptom at onset. Received Solumedrol/prednisone course. Two months out, I have constant myelopathy (burning, painful skin tenderness) in both thighs and intermittent symptoms aggravated by sitting: I get substantial pain across my lower lumbar area and down my legs and my legs get extremely heavy. My gait is somewhat compromised when these symptoms present. I am also more fatigued than pre-TM Are these common TM complaints? I am thankful that these are my only residual symptoms but I am hoping for more improvement. But I am wondering if theres anything I can do to HELP them improvelike supplements (omega-3 fish oil, Neurosol) or exercise??? I would appreciate any thoughts Karen
Re: [TMIC] Newly Diagnosed/Mild case
Karen, Welcome your symptums are very common. Physiotherapy will help you. Learn what needs to be done and DO IT Every Day. I'm 5 years out and still benefit from stretching and strengthening, EVRY DAY. The central pain may get worse. Are you on meds for it? Most are on a tricyclic antidepressant, anti-convulsant and othe meds. I use a Cannabinoid medication, Sativex, from Canada. In the U.S. there is Marinol by prescription, or Mrijuana from a friend, or if you live in one of the Medical MJ states, you may grow your own. hope that helps Frank
RE: [TMIC] Newly Diagnosed/Mild case
Hi Karen, Your symptoms sound very typical. I too have a mild case. I often found that the pain preceded a certain degree of recovery, so I didn't mind it. It's not that way for everyone, however. I'd like to repeat the advice you've gotten from other people already. I found physical therapy to be extremely helpful. I don't think that it helps you to heal, but it does keep you active and teaches you how to use your limbs without causing damage. Another important aspect of physical therapy, for me, was that it gave me something to do. It got me out of the house and gave me a reason to get dressed. There does not appear to be a magic pill to help you heal. But from my research I came up with a couple of things that "couldn't hurt." Somewhere out there I read that potassium may be helpful, so I eat a banana every day. Vitamin B12 may have some effect on myelin production, so I pop a pill every day. I also read that sulfur may be beneficial so I stepped up my cauliflower consumption. None of these seemed extreme. Since TM affects all of us in different ways, it is difficult to say what is typical or what you should expect. For instance, unlike most folks, I am most severely affected in my hands. Although it's been 15 months since I was hit with TM, I continue to make progress. However, the rate of recovery is maddeningly slow. Good luck. You will want to keep monitoring this group. It really helps to know what's going on and that you're not the only one. Take care, Rick From: "Karen Doyle" [EMAIL PROTECTED]To: tmic-list@eskimo.comSubject: [TMIC] Newly Diagnosed/Mild caseDate: Mon, 5 Dec 2005 11:50:13 -0500 I am newly diagnosed with TM; had the typical girdling symptom at onset. Received Solumedrol/prednisone course. Two months out, I have constant myelopathy (burning, painful skin tenderness) in both thighs and intermittent symptoms aggravated by sitting: I get substantial pain across my lower lumbar area and down my legs and my legs get extremely heavy. My gait is somewhat compromised when these symptoms present. I am also more fatigued than pre-TM Are these common TM complaints? I am thankful that these are my only residual symptoms but I am hoping for more improvement. But I am wondering if theres anything I can do to HELP them improve like supplements (omega-3 fish oil, Neurosol) or exercise??? I would appreciate any thoughts Karen
