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Timmi

New member
Joined
Mar 10, 2010
Messages
6
Reason
PALS
Diagnosis
06/2009
Country
AU
State
Western Australia
City
Fremantle
I was diagnosed (after 2 years of test's etc) in August last year. Since that time I have been on IVIG treatment and am responding really well. Like others here, I seem to lapse a few days before the next treatment is due. Only my right hand is affected and I have been able to continue working. I count my blessings that the diagnosos wasn't one of the alternatives......

I was wondering if there is any work being done on our histories to find a common link that may lead to the cause of MMN?
I'll list some of mine and see if anybody else has something in common.
I am 58yr old male.
Spent most of my life travelling all over the world, so have had a lot of vaccinations - Cholera, Smallpox, japanese Encephalitis, yellow fever, etc.. etc...
I had a bout of Psoriasis when I was about 21, but no recurrence.
I get shingles occasionally - I think this is from contracting chicken pox in younger years? (this is carried in the nervous system I believe, similar to cold sores?)
I have never suffered Flu symptoms (although I have had heavy colds).
I have been in good health all my life, never hospitalised for any sickness, average weight, average build.
Not allergic to anything that I know of.
O rh neg blood group.

The reason I am interested is that i was talking to another patient getting IvIg and his condition had been linked to a Flue shot that was given to some people in 1976!

The more I read about this condition, the more confused I get!
 
Hi Timmi,

I don't think I can help you much as we have almost nothing in commom according to your list, except we are a bit close in age with me being the old person.

I am a female (statistically 1 in 3 persons with MMN are female)
I first got symptoms in about 2002- my finger began to curl- when I was 54
I am 61 now and began IVIG in Jan 2007. My progression is very slow. I still get very tired.
I have been to Fl and a few other places in the US - although I did go to Cuba when I was 3. Back then it was like going to the Bahamas.
I have the flu quite often though less now that I get the vacine every year.

There does not seem to be many answers in how we made this happen to ourselves or someone else made it happen to us. It just seems to be.

I am much better now than I was without the treatment and I am now working out and making good gradual improvement and have lost about 18 pounds. These three things have improved the quality of my life very much and I am very grateful. So I don't think this helps you much but I wanted you to know I did read your entry. Best of luck to you. Sincerely, Peg
 
Hi Peg,
Thanks for the reply and comments, I have seen your name on a few MMN forums, so you probably have a lot more knowledge than me about our affliction.
I'm sure age has nothing to do with it as there is one young man of 17 on one forum.
From what I have read, everybody has slightly different symptoms and reactions to treatment. I am having IvIg 156mg in two sessions over 2 days each month. My Neurologist would like me to have it (78mg) every two weeks but because of my work and frequent travelling that is almost impossible and I cannot afford to stop work just yet.
I don't get any reaction at all from the IvIg and I get it at a rate of 400ml per hour (but I do take a lot of water during the infusion). The IvIg works like magic and my symptoms almost completely dissappear a couple of days after infusion. I only have residual weakness in my thumb, but I think that is now non reversable damage due to slow diagnosis. Usually the symptoms return a few days before my next infusion is due. This month I have started taking Cyclosporin as well, so hopefully this will extend the periods of normality. So far, no negative reactions to cyclosporin either.
Good to hear that you are getting improvement with treatment too.
 
Hi Peg,
I have MMN and have been getting ivig for the past 6 years. I am 54 years old now. Do you experience any sickness or side effects directly following your infusions? I get flu like symptoms for 3-5 days following my 2 days of infusion every 5 weeks.
Bryan
 
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