no response to IVIG?

I was diagnosed with MMN when I was pregnant at the age of 31. The symptoms started in my right leg with sudden foot drop and my left hand. Recently I have developed weakness and twitching in my left leg and hand. Only one finger in my right hand has any real strength and my fingers are curled. Since my diagnosis in 2002 I have had 4 courses of IVIG. The neurologists have concluded that I do not respond to it. Certainly there is no dramatic effect but I am wondering whether the last treatment may have had a small effect insofar as I was able to straighten my right hand for a few weeks. Also, for about 6 weeks, I had no twitching. Has anyone else responded in this way? Has anyone tried any alternative treatment (whether conventional or alternative) which has had any positive effect? I still lead a full and active life but I am prone to sleepless nights due to the twitching and also worrying about the future (if I am like this at 39, what will I be like at 69?)

Hi,

You are right. You are very young. Has anyone talked about Restless Leg Syndrom (RLS) with you? That may be part of your twitcing at night. I take 1/2 vicodine at night and 2 benedryl as the vicodine cause itcing. Both my neuro and my reg doc think that is good for RLS. The meds advertised for RLS have way too many side effects for my tastes.

It does not sound like you got a consistent trial with IVIG. Four times in nine years is not much of a try in my opinion. I have never had a dramatic change with IVIG but I believe it has really slowed my progression - which was slow anyway, but I am not tired like I was. I get it every 3 weeks for the last year or so and every 2 weeks for the first 2 years.

If you get cramps try tonic water with codene. Best Wishes, Peg

Thanks Peg. The last neurologist I saw was unhelpful. He said that if the IVIG had worked, there would be an obvious response i.e. strength back in my hands/legs. But so long has passed since I got the weakness in my right foot and hand, that I think it has done permanent damage. I must admit that I hate the IVIG treatment, so in the past that has put me off pressing for more treatment. However, I am encouraged by what you say about it slowing down the progression of your condition, so I think I will insist on giving it another go. When you have it every 3 weeks, do you go into hospital for a week at a time? For me, it is quite a commitment work-wise. Re the RLS, is this part of the MMN or a different condition? I do not suffer from fatigue with my condition - just progressive weakness, which I think is progressing quite quickly. Thanks again.

Hi Martisa,

I have been very fortunate to get all my infusions IVIG at home. My first one was two days in a row and I had really bad flu like symptoms. Since then I have recieved meds prior to the IVIG - tylenol, compozine, benedryl, and liquid prednisone. I have not had any side effects since. I have had the same nurse for every treatment except one when she was on vacation. Now I wait until she gets back from vacation. She is a good friend now. Treatment takes 4-5 hours. I sleep on the couch through most of it.

I probably had MMN for 4 or 5 years before treatment and I got progressively more tired and fell alot. My baby finger in atrophied and has not gotten any better and another finger is starting to bend since I began treatment 3 years ago. That is pretty slow. As far as RLS I don't know for sure it is part of MMN but my Doctors are surpised by it and so it seems to be par for the course. Other things I have they tell me are a fuction of my back or something else but not part of MMN. Fasciculations are a part of MMN. Best Wishes, Peg

correction. My doctors are NOT surprised by RLS. They are just another form of Fasciculation - do a search on that word and see what you come up with. I am sorry about my typos in my last post. Peg

Thanks very much for your responses, Peg.