MMN progression

[kxbsn]

Could anyone here share his/her story about MMN progression? My boyfriend (35 yrs) had been diagnosed MMN and in IVGV treatment for about 7 years. Currently the treatment is going well and seems stopping progression. but I am still so worried about his deterioration in the longer future(saying 10 or 20 years later). Will he get disabled or need a wheelchair?

thanks

 

[Al]

Re: help

That's a difficult question to answer kxbsn. As with most mnd's everyone seems to progress at different rates. Just as a guess and I'm no doctor I would think him lucky if he's not in a wheelchair in 20 years. On the up side though, they might have a cure by then. I tell people to live for today.

AL.

 

[ginni]

Re: help

My son was also diagnosed at around 38 yrs old. He has been getting IVIG for about two years. It helps. He is a different person after his treatment- back to normal. His left hand is mainly affected. I am as frustrated as you are. I am looking for answers as well. Maybe there will be more people out there that can share their stories. Hopefully they will find more answers. I am hoping this is the worst of it but who knows. Hope to hear from you again. The support really helps.

 

[kxbsn]

Re: help

Thanks for the attention from qinni and AL. Yes, i know it's difficult to answer. But i wish people or partner or relatives who experienced it could share the story so that we can get more information. You know MMN is really too rare to know. All we can rely on is the sharing among us.

 

[crystalkk]

Re: help

kxbsn,

MMN is very rare and the fact that it is 7 years and the treatments are working is great, be thankful for that... I don't think there are alot of people on here that have been diagnosed with MMN that long and alot of them are in the stage of seeing if the treatments work that is one of the ways to know if it really is MMN and not and MND.

 

[ginni]

Re: help

Until now I hadn't found anyone with this disease. It is helpful to finally talk to others. My son gets IVIG every ten weeks but now they are changing it to be two days every three weeks. I hope this will continue to work. His results are amazing. He almost returns to normal for the few weeks that it lasts and then totally downhill again. But like everyone else there are so many unanswered questions- what does the future hold being one of them. It is so comforting to speak to others. Like Al said, maybe in time there will be a cure but for now we have to be grateful that there is a treatment. I wonder if certain vitamins, alternatives would help? Anyone have any ideas? ginni

 

[Al]

Re: help

If you look at Mike27's blog, he has a few supplements that seem to do well for him.

AL.

 

[kxbsn]

Re: help

I found brain talk website which seems providing more information about MMN. And someone mentioned that IVGV treatgment would lose effectiveness over time. Maybe this is another factor to worry about.

Sorry i may be too pessimistic.:-?

 

[ginni]

Re: help

I hope it always continues to work. I need to be optimistic. Thank you for continue to answer my posts. Where is that site you are talking about where you can get more information?

 

[Peg B]

Hi Ginni,

Sorry I missed this. I have not been on for awhile. I have MMN. I have been on IVIG since January 2007. My symptoms actually started before 2002. That year I started having trouble holding a pen long enough to write a check. That has not changed much as my babyfinger (Right hand) is atrophied. The next finger on my R hand is beginning to curl, but I can make it straight with a little effort. I used to fall a lot. My legs tire easily and so I use a cane at airports and malls where I cannot use a grocery cart. I do not want to be knocked over or bumped. If I use a cane/walking stick, then I can move well and do not have to think about walking - it becomes an automatic process again. Grocery carts are a great adapted technology:grin: Most people do not know or can tell I have a disability as I get around OK. I get very tired and used to take more naps, but I began a very easy and slow exercise program last Jan, lost almost 30 pounds :lol: so far and feel much better. I am more tired close to treatment and some days are better than others. My progression with or without treatment is very slow, but I do get tired. I also have muscle cramps and Restless Leg Syndrom (RLS), both of which are a part of MMN. I drink lots of tonic water (has quinine) to prevent the cramps and vicodine for pain and RLS. (Only one vicodine a day 90+% of the time.) I hope this helps.

I am very blessed as I realized early on, that if I spent my time worrying about the future then I would use up my present. If the day should come that I need a wheelchair, then I will accept that on that day. My first DX was ALS and I realized then that worry would not change the future but only the present. Please don't waste your time in worrry.

There is very little information on MMN. I have looked everywhere. This forum is great and it does help to talk about the disease. If you have specific questions please ask and we will all see if we can help. God Bless you. Peg

 

[ginni]

Hi Peg, Thank you so much for your response. No there isn't much information on this disease. We recently visited John Hopkins in Maryland which claimed to have a MMN clinic. However, we really learned nothing new. It is what it is, whatever that means. I just hope reseach continues. Right now Joe is getting two days of treatment once a month. That seems to be working better as of now. He used to get it five days every twelve weeks. He would get sick and almost go downhill before the next treatment now it is a maintenance almost before he feels anything. For the most part it is centered in his hands. His legs are not affected right now. I pray for you and he that maybe some day soon they will learn more and find a cure. It was so good to hear from you. Talk again.

 

[ginni]

Hi Peg, Please forgive if you get this twice. Thank you for responding. There isn't much known about MMN that is true. We very recently went to John Hopkins in Maryland to the MMN clinic and learned nothing new. It is what it is. Can it go away, who knows. Can it get worse who knows. For now be happy the medicine works. Depressing but I guess that is the way it is. Joe right now is getting treatment every month for two days. It seems to be working fine. He used to get it every 12 weeks for five days but got sick and almost back to square one where he couldn't move his hands. This is working much better. I pray that one day in yours and his lifetime they will learn more. For now, we look to the bright side that the treatment works. Thanks again for answering. It helps to talk with someone that knows the disease. No onereally does. Stay well. talk again. Ginni