MMN Side Effects?

[my3sunz42]

Hi there ... not sure if anyone still reads these threads or not, but since MMN is such a rare disease I figured I'd start here. My father was originally diagnosed (by 2 drs) with ALS, after a final visit to Johns Hopkins & a trial IVIG they determined he had MMN. He's been going through monthly infusions for over 3 years now and been very fortunate to maintain his strength.

However, possibly unrelated to MMN, he began experiencing extreme dizziness, shortness of breadth, fainting & low/high blood pressure (goes back & forth to extremes). I should have mentioned my dad has been a triathlete for most of his adult life (runner, biker, swimmer). Cardiologist decided to put a pacemaker in thinking it was his heart (he has NEVER had any issues w/blood pressure, cholesterol, history of heart issues in family, etc.).

Three months have gone by since his pacemaker was put in place and he's still having the same issues - to the point where he literally passes out. Cardiologists are baffled and are now pointing him back to a possible MMN issue.

Question for those MMN patients ... have any of you experienced these same affects - dizziness, shortness of breadth, fainting, low / high blood pressure? If so, have your neurologists found any way to ease the symptoms?

Any help is greatly appreciated!

 

[Peg B]

Hi,

I check this every few days. I was first DX with ALS but have had IVIG since Jan 2007. I have never heard of these issues as part of MMN except it was mentioned once in an article as very rare. I would urge you to see what the neuro says. In addition there is an MMN group on Facebook and another forum called MMN forum: mmnforum.com . The Facebook group has 7050 members and you could post your question there. Also you are correct in that your dad's condition could be totally unrelated to MMN. Sometimes that is frustrating but I know my neuro is very good at having me check symptoms with other doctors before presuming they are a function of MMN. Best Wishes and I hope you write here again as I would be very interested in how your Dad is doing. Congrats on his being so active. Take Care, Peg

 

[Peg B]

I check this every few days. I was first DX with ALS but have had IVIG since Jan 2007. I have never heard of these issues as part of MMN except it was mentioned once in an article as very rare. I would urge you to see what the neuro says. In addition there is an MMN group on Facebook and another forum called MMN forum: @ mmnforum.com. The Facebook group as 7050 members and you could post your question in either or both places. Best wishes with this and please write back as I would be very interested in how your Dad is doing. You are also correct in that this could be totally unrelated to MMN. I know my neurologist is very good at sending me to other specialists to check out all my symptoms before assuming they are related to MMN. Congrats on your Dad being so active, I think that is a wonderful thing. Sincerely, Peg

 

[Peg B]

Hi,

I am sorry in my last reply I made a mistake: To sign up to the MMN group on Facebook go to multifocal motor neuropathy not MMN the multifocal... group has 105 members. Sorry, Peg

 

[rulimping]

Hi my3sunz42

Sorry to hear of your Dad's symptoms.

We believe I have had MMN for about 10 years now,
altho only diagnosed about 4 years ago, and I have never experienced shortness of breath or fainting.My understanding is MMN symptoms start distally (hands & feet) and slowly moves proximally.

I think I recall reading a couple of journals that mentioned involvement of the phrenic nerve, but only 1-2 cases globally I think.

I'm not a doc and can give no medical advice but I think it's unlikely to be attributed to MMN.

Good luck in your search
xxx