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05-04-2009, 07:44 AM
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#11 | ||
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Stephanie,
I'm so glad to hear you're feeling better. IVIG didn't seem to do a lot for me, so I'm glad you're not going through it for nothing! Keep the faith and positive attitude - you can win this battle! Becky |
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05-04-2009, 01:23 PM
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#12 | |||
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I know exactly what you mean about pushing yourself and running from this damned disease and finally collapsing. I'm the "push through it" kind of person and I have finally learned that with MG it just doesn't work. Now I give in to the fatigue and rest when my body starts the downward spiral. But not without sadness, frustration and bitterness that I cannot function.
My doctors have me on Cellcept instead of Imuran. I don't completely know the difference but you might ask about it. So far - no hair has fallen out. I just got out of the ICU with an MG crisis and was on 5 days of IVIG. They didn't say how long it lasts and I'm wondering if I will need it again soon. Have they told you? I wish I could fix this. But know that you are not alone. I know how you feel and I know that it SUCKS! Quote:
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05-04-2009, 02:21 PM
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#13 | ||
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Grand Magnate
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Stephanie, I'm sorry your first experience went so badly. Just ask lots of questions and see what else they can do for you (like the PICC line Erin spoke of).
Now about this numbness in the calves and feet!!!  Nope, definitely not related to MG. When did it start? Is it in both legs? Anything going on with your hands? Have you spoken to your doc about it? If not, do right away. DO NOT do anything until you know what is causing it. A hot bath is not good for MG, so maybe skip that for now. I know that cold would be someone's next thought but don't use anything too cold. You can get cold-induced injury, which only makes any nerve problem worse. I know about this crap because I have hot, burning feet leftover from my B12 deficiency. It didn't get caught very soon and wasn't treated well enough right away. Neuropathy is caused by lots of different things. You could have a spine problem too. Just speak to your neuro about it as soon as you can, okay? There are these little things called "Boo-boo buddies" that I got at a local grocery store. They are gel packs that look like animals or cars or sports balls and are made for kids. They are not as cold and are good for temporary relief of neuropathy. That's the problem with MG; you push and it pushes back. When I was reckless in 2005, I ended up with my first crisis. I don't ever want to go through that again so I've taken the word push out of my vocabulary. Hard to do when you're a stubborn Norwegian. I'm glad you're getting good treatment. I hope the IVIG makes you feel better. Annie |
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05-07-2009, 07:05 PM
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#14 | |||
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My vitamin B12 was normal...I had a doppler study yesterday for my legs...basically it was about 10 blood pressure cuffs wrapped around me and getting tighter and tighter....not sure about the results yet...Hopefully, I can get some answers to this concern!
Why is a hot bath bad for MG? I love my hot baths...I get them as hot as I can stand it...but I am soooo tired after I get my bath...honestly, i thought it was just because I take my bath at bedtime and that I am just so tired because the bath just relaxes me so much... |
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05-07-2009, 08:08 PM
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#15 | ||
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Grand Magnate
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The simple answer is that heat makes MG worse.
The more complicated answer: Heat increases an enzyme in the body (acetylcholinesterase) that "eats up" acetylcholine. Mestinon is a cholinesterase inhibitor. In other words, Mestinon keeps that enzyme from eating up the acetylcholine so you can use whatever you have of it longer. Cold does the same thing. So extremes of heat and cold are very bad for people with MG!  I hope you don't have any arterial disease of your lower legs. I love baths too. Hot baths are bad for circulatory probelms as well. Maybe a "warm" bath might do! As long as you cool yourself off afterwards. And maybe the timing of the bath is important too. At the end of a long day may be the most welcome time for one but may be the worst time for one. I hope that helps explain it. Hope the test results are good. Annie I had to add . . . what was your "normal" B12 level? For example, if someone has symptoms of a B12 deficiency, like neuropathy, and their level is 400 or less and the range is like 200 - 800, then I would get some sublingual B12 and take it anyway! Homocysteine and methylmalonic acid (blood tests) are two markers that can be above normal if you are not absorbing B12, even if your levels are in the normal range. This may not be the case for you but I had to mention it. A B12 deficiency doesn't start below normal. It starts above and then slowly goes below. |
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05-09-2009, 04:08 PM
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#16 | |||
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Hi Annie,
I took your advice and took a warm/ cool bath. I actually felt better when I got out! I took it right after supper instead of waiting til bedtime. My vitamin b12 level was in the mid 200's I believe...I will have to double check my labs. Hmmm....I have some B12 dots that my mom bought me the other day....you know the saying...."mom's are always right"...My doc mentioned something that was odd about my labs....my thyroid antibodies were high....but my thyroid tsh, T4, and T3 were all within the normal limits... |
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05-09-2009, 06:22 PM
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#17 | ||
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Grand Magnate
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B12 in the 200's, eh? Your doc should've run homocysteine and methylmalonic acid because it was so low. A "healthy" person who is absorbing B12 would not have a B12 that low! www.iherb.com has very good sublingual B12 that you put under your tongue and it absorbs into the bloodstream right away. And their prices are far lower than in stores. Jarrow and Source Natural are good brands. I take 5 mg. every day. My B12 was 101 when it was tested. I was on fumes and having signs of dementia.
You need an endocrinologist to assess the thyroid situation. If you have antibodies that high, you need help no matter what the other #'s say. Don't let a "regular" doc take care of endocrine problems. They are too specialized and you need someone with experience. Glad the bath was better. There's nothing like a good soak in a tub, all by yourself! Annie |
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.....how do you all handle this? the doc said that after this...I would need IVIG about every 3-4 weeks outpatient!!!
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