Anyone ever FULLY recovered from MMN??

[twisty]

Hi there, i would like to ask everyone if they have / have known anyone who fully recovered from MMN?? OR someone who has tried to ween of it and had relapses?

My neuro, like most doctors ,gives the answers like "at the moment it's looking good, but we never know what might happen."

Give them hope, but not enough for a lawsuit if it doesn't work out!

Neuro wants to "step out" my treatments slowly, adding a week here and there between infusions. I currently am on 4 weekly.
The plan is to get to 6 weekly, then go cold turkey.
She says the chance of relapse is high.
The nurse where i get treated tells me she's never heard of someone successfully ween completely off.

They've also never seen a case as severe as mine or in someone so young (im 24 now, diagnosed at 22).

Ive been slowly worked out to 4 weekly over that last 2 years, and im still getting stronger and stronger, so im hopeful. This time in 2004 i couldnt do up a button, couldnt lift my arms above waist height, and could walk about 10 metres before needing a half hour rest. Now im jogging for short periods, throwing my kids around, doing the heavy lifting at work etc etc.

I just dont know how i could cope with going off it and getting a relapse.
Facing infusions for the rest of my life doesnt exactly excite me.

Anyone wanna share their road to recovery stories???

Thanks all.
Twisty

[phil h]

I haven't heard of anyone being "cured" from MMN. Its my understanding that the IVig masks the effects and slows down the disease's progression, but never cures it. The research I've read says ordinarily our bodies become 'resistant' to the IV's, so it loses effectiveness over time, working optimally for 3-7 years on average. They can add other meds to it to try to keep it working longer, speed up IV schedule, etc. I've been getting IVig for 3years, so I'm a bit nervous about when it will become necessary to make changes in my treatment plan. Continuity is comforting. Sometimes I feel like I need to encourage confidence in my neurologist more than she does me. I'm the only case she has, and she really wants to do all the right things, but of course, is unsure of herself, inexperienced with MMN, as I am the only case she's ever had. (I heard that the neurologists in America outnumber MMN patients by about 5 to 1!) I was diagnosed at Cleveland Clinic, and she'll send me back there again when I need a change to the current treatment plan.

[Mick05]

Twisty

Congratulations, that is awesome! My Neuro keeps saying he is going to cure me and I think he truly believes that. Last time I was in, I told him I was ready to be cured, just smiled? YOU ARE AN INSPIRATION, AGAIN, CONGRATULATIONS.

Mick

[powder pig russ]

Twisty

According to the leading researcher, Dr. Pestronk, "curing" MMN is unknown. I think others here have had similar attempts to space out the treatments with poor results. A different method worth considering (and used by some participants in this listserve) may be Dr. Pestronk's Rituxan/IVIg protocol which accomplishes the same thing but uses Rituxan which seems to "boost" the effectiveness of the IVIg.

Unless you're prepared to get further weakness you can't shake, I would be wary of any attempts to wean you off IVIg. Most cases require more frequent treatment rather than less without complementary drug therapy. For me, I never responded to anything (tried 'em all) and am now becoming so twisted and weak myself and likely soon in a powerchair full time.

Hopefully, you've got something other than MMN and weaning would work fine as it does with neuro-muscular conditions of a similar ilk.

Be beautyful. Russ

[Mick05]

Twisty

The question begs to be asked, did you do or take anything other than the IVIg to reach the level of improvement you have achieved. Supplements, Vitamins, special diet, etc. Certainly, your youth was in your favor. What in your opinion help you reach these results. Again, congratulations!:D

[kaylish]

In some respects you are so lucky because you are so young and who knows what developements the field of neurology will see over the next 10 - 20 years. Hang in there Twisty :)

[lynngar]

Hi twisty,

first congradulations for your progress...it feels so great when you can do something again.... remember when picked up a glass of water the first time got so excited...it was in a restraunt people looked at me as if i were nuts..I have been on Ivig since started in 1998 then stopped and started back again in1999..been on ever since..will be nine years come nov.
anyway started out once a month, the went to evey two weeks,about a year ago tried every three weeks..and it is holding from one infusion to the next..some times have noticed a day or two before getting a little week..still can't do the buttons or zippers..and heavy lefting, can pick up small objects with the index fingers of both hands...and writting and printing are hard to do, but keep trying it...and have no grip strenght.my grandson was three when i got this..he learned to button his own shirt at three,he is ten now, he dosen't remember grandma...being any differant...when my oldest grandaughter was born afraid to pick her up..afraid might drop her...but now can lift for a bit. again so happy for you.

[ainee]

I wasn't diagnosed as with MMN or any other neurological illness or condition - but I suffered a quick onset of horrific neurological symptoms - found a simple treatment which suppressed my symptoms - and after 18 months of research, experimentation etc., the symptoms started to reverse.
Find - My Story May Give Hope - by ainee - in BT - Success Stories. I've also posted info on other threads, because my symptoms crossed over many neurological illnesses and conditions. If I can benifit from a simple treatment, perhaps others can also.

ainee.