Charcot-Marie-Tooth Disease Support Group
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) that is characterized by loss of muscle tissue and touch sensation, predominantly in the feet and legs but also in the hands and arms in the advanced stages of disease.
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
Any help would be greatly appreciated. I have my treatment on 6 Feb.
Cheers Meera
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
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.
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