What is Charcot-Marie-Tooth Disease
Charcot-Marie-Tooth disease, also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy, is a heterogeneous inherited disorder of nerves (neuropathy)...
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Symptoms worse after IVIG???
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Has anyone ever experienced symptoms (pain, less flexibility, stiffness, aches...) becoming worse when they have IVIG. I am in the process of trialling monthly treatments , I am up to the third month and wonder whether to go ahead with it or not??? I experience 2 weeks of hell (where I say I am NEVER having the treatment again), then one good week(don't think it is much better than when I started) and then a week of thinking, maybe I will do the next treatment.
Any help would be greatly appreciated. I have my treatment on 6 Feb. Cheers Meera Posted on 01/31/08, 04:01 pm |
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I had IVIG back in the early days when they were just starting to try it. They put me in the hospital for 10 days, told me "it'll feel like you have the flu", then proceeded to get upset with me when I puked my brains out for a week.
During that time they took me for an EMG and had two idiot doctors-in-training do the tests. They spent over a half hour on each limb trying to find my unresponsive nerves and I could barely move my arms for a month afterwards. I think I was 12 or 13 at the time and ended up taking 2 weeks off school to recover (the other two weeks went over Christmas break, made for great holidays). I never had problems with my arms previous to that (though I did have nerve damage, I didn't notice any affects), I've had problems with my arms ever since. My legs seemed worse, or at least no better after that treatment. I'm pretty sure the decline in function re my arms was due to the doctors overworking the nerves when they did that 1.5 hour EMG though. My doctor keeps trying to convince me to try IVIG again insisting it's different now, but I can't even stomach the idea. 
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Hi, I can understand what you are describing.
Recently, I was put on Levaquin for a sinus infection, and I've been off of it for a week, but I'm now having pain in every muscle in my body. Before that, I had my pain under control well. I hope it will pass, but I noticed on the computer a lawsuit over that particular drug. Good Luck! abarrett
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Thanks to the replies. IVIg is white blood cells given introveneously . I would go to hospital for a few hours and get it and then return for next visit which was in a months time. I think it is more for CIDP patients ( i have symptoms of both) as CMT patients don't normally respond to IVIg apparently.???
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yeah it would be for the CIDP, I have symptoms of both as well, might be interesting to compare notes...
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what is the acronym of IVIG mean call me dumb I have never got any thing for my desease except Braces for my legs
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