Multifocal Motor Neuropathy

[brooksea]

Peg,

You have been a help to so many on this forum. I'm so glad to hear your good news!

May you continue to receive benefit from the treatments!

 

[hopingforthebest]

Great!

Dear Peg:

So happy for your good news! MMN is the treatable disease!

We knew when IVIG for one year was not helping at all that sooner or later it would have to stop and they gave us the news of PMA classification of ALS.

That is the big indicator that it is MMN that the IVIG helps! Good for you!

Hope you are going out to celebrate this weekend. I will have a glass of wine tonight and toast your good news!

God Bless you,
Patty :-D

 

[Peg B]

Thank you Jimmercat,

Your words are very kind and mean a great deal to me. Thanks again, Peg

 

[tmasters]

IVIg Results

Peg,

Glad to hear your good news! I've seen your postings here and on the other forum, and I was waiting anxiously to see how this came out for you. I wonder, how long have you been on IVIg, and how much improvement did you see? I thought you were on the fence?

My situation is that I was given an initial diagnosed of MND by my neuro back in January, but the ALS specialist stopped short of an ALS diagnosed because I only have LMN signs. He recommended IVIg to rule out or treat for MMN.

I start the first of 9 IVIg treatments this coming Monday the 10th. I've read that, if there is a return of muscle strength, that it will occur anywhere from a few hours to 3 weeks after the IV. Does this seem consistent with what you've experienced?

Thanks,
Tom

 

[Peg B]

Hi Tom,

I have had symptoms since 2002. I was also told I have ALS by a neuro Oct 31, 2006. Dec 7, 2006 the ALS specialist wanted to see if MMN, by giving me IVIG. So my story is the same as your in parts. I have no anti bodies in my blood, and only LMN. I may have one conduction block, but not two. I have been on IVIG twice a month since Jan 2007. Overall there is no subjective change either worse or better, but the NCS does show some improvement, which it would't if I had ALS. So that is the story. I am not worse or much better functionally, so it seems the IVIG is keeping me steady. This is very good.

I hope you have great results with the IVIG. If you do have side effects, there are many things they can give you, so make sure you ask. Let us know how it goes.

To all others, Patty etc. thank you so much for your kind words and good wishes. Sincerely, Peg

 

[tmasters]

IVIg Update

Today marks one month since my first IVIg infusion (May 12) and so it's time for an update.

So far, I've had 6 infusions of 35g each. The first 3 were all in the first week, the other 3 were spaced one week apart. I have 3 more to scheduled.

Unfortunately, I haven't noticed any improvement of any of my symptoms. It's still very difficult to stand on my toes; walking is slow especially the farther I walk. Right arm is heavy. Actually, if anything, I would say things are just a little bit worse.

I go back to the neuro on July 1 to see if he wants me to continue IVIg or stop or try something else.

-Tom

 

[JAKE]

I took 2 series of IVIG treatments back in Nov. of 2006 and seen little, if any improvement. A local internal medicine Dr. here where I live wants me to take another treatment for MMN called Cytoxin. I have got to see another nerve/muscle specialist in Jackson, Mississippi on July 3rd to get him to recommend it first because that is the closest place to get it done.

 

[Peg B]

HI,

I wish you both well. I hope Cytoxin works better Jake and that you Tom maybe get some more time on IVIG, to see if it helps. I don't see much of a difference on or off. Today I got my first IVIG after waiting a month instead of every two weeks. At the end of the month it did not feel any different overall. Some days are better than others. But the objective test showed some improvement after a year and a half.

Please keep writing on this site and give those updates. NO ONE that I have run into besides medical personnel has even heard of MMN. Thanks, Peg

 

[Dave G]

New member recently diagnosed

Hi all. I live in England and I was diagnosed with MMN at the end of last year. The first noticable symptoms were observed by me back in 2002 when my left hand started to 'sag'. The fingers wouldn't work and I had difficulty doing fine work like fastening buttons and zips.

At that time my doctor diagnosed a mild stroke and though this was not confirmed by the hospital I was treated with aspirin until last year.

Around August last year my mobility started to go and progressed rapidly to a point where I could only walk with the aid of a stick and had to retire on medical grounds. Following my MMN diagnosis last November I began a course of treatment with an Immunoglobulin infusion. So far I have had four courses of treatment, the last one ending yesterday (31st July). In spite of this treatment there has been a slow but steady deterioration in my mobility to the point where I now find it difficult to walk more than a couple of hundred yards.

I would be interested to hear of other peoples experience with IGG. Does it usually work? Do people find temporary respite from the symptoms following the infusion? Is it actually worth taking?

I look forward to your comments.

 

[Peg B]

Hi Dave,

Welcome. I am sorry you have to be here too, but it is helpful to have a place to talk about this. My symptoms also started in 2002.

There are others on that forum who have MMN and the infusion does not work for them. We (US/Canada) refer to it as IVIG. you called it IGG. I assume it is the same thing where you get a 4 to 6 hour infusion of blood products. I have a differentiated diagnosis of ALS or MMG. But it sounds the same as I have only lower motor neuron signs. (The doc says I am positive for ALS in three limbs according to my EMG. Does your bloodwork show any problems? Do you tire easily? I am right handed and my right hand and legs are affected. Are you left handed? Where and how do you get your infusion?

To answer your question is IVIG worth it? I don't know. I am now on montly infusions. I was on every two weeks from Jan 06 to June 08. I can't tell that much difference on or off except I may be more tired. However, it is not an even decline to infusion day. Some days I can move my baby finger and don't feel as week. Other days I cannot. I think the not knowing for sure gets to me sometimes, but my progression is very slow and it sounds like yours is also. Please write back and try to answer my questions to you and tell us more. I fell a lot before I stopped working did you? Again welcome. Sincerely, Peg

 

[Dave G]

Hi Peg.

Thanks for your welcome and your comments. it's good to be able to talk to people with MMN rather than to professionals who only know about it in a theoretical way.

I will try to answer your questions.

Although my left hand was the first limb to be affected I am in fact right handed. My right leg and foot are the most badly affected lower limbs though the left side is deteriorating too. I haven't had any real feed-back on my bloods yet though God knows they've taken enough of it. I do tire easily and I now need someone with me if I am going more than a couple of hundred yards. Luckily I live in the town centre so I am still able to access the shops and bars though with increasing difficulty.

My reference to IGG was a mistype. I was referring to IVIG. I was tired at the time. So far I have had 4 courses of IVIG. The first course was in January of this year following my diagnosis. The other 3 courses were on a monthly basis in May, June and July.

Treatment consisted of a 160m IV infusion of IG in a solution of 1600m over a period of 4/5 days. The first 2 courses were administered as an in-patient in the Neurology ward of a local hospital. I was then given the choice of remaining as an in-patient for the remaining 2 courses or attending a day clinic in a different but still local hospital. I chose the day clinic and for some reason the same course of treatment takes a day less on average than the in-patient ward does. I can also get home every tea time.

I do have falls and trips but not as many as might be thought. Most of the falls are caused by the fact that my right foot sags downwards from the ankle and I catch it on any small protuberance on the ground. I have learned to compensate by lifting my feet higher when I walk. It looks ungainly but at least I don't fall over as much.

Like you I have good days and bad days. On a good day I can still do quite a lot for myself, albeit a little bit at a time and very slowly. On a bad day I tend to sit at the computer and doze.

I hope this answers your questions. I look forward to talking again.

 

[Peg B]

Hi Dave,

The distribution of your IVIG is very different from mine. I get it once a month now at home. I am so excited as tomorrow is the day. I feel like a vampire who needs her blood fix. Yesterday we - my dog and I then walked to the park. Between my pug (3/4 pug and 1/4 Haveneese) It took us an hour to walk a mile. We sat at the park then my husband came and we watched a ballgame. I was out about 5 hours. Today, however, I went to mass and then spent the rest of the day on the couch. My legs ache and I feel very week. I could not figure out why I was so tired, but now that I wrote this I guess yesterday affected today a lot.

The way you discribed your foot sounds like what people refer to as "foot drop." I don't have that, I just fall by loosing my balance if I do not pay attention. I am going to attend a rally for an ALS walk in August. I may try to walk and just take my cane with me. I usually only use it in the airport or when we are walking somewhere and want to move faster. We went to London last year and I used it everywhere I went so I did not hold my family up. It worked well.

I still have a differential diagnosis of ALS or MMN. Do you or are they saying MMN for sure?

I think I am going to try to get my IVIG schedule to every 3 weeks. I will see the Doc in Sept. Take Good Care and thanks for writing back. Peg

 

[Dave G]

The only diagnosis I have been given is MMN. My neurologist seems convinced that this is the problem and to be honest I hadn't even thought of questioning this.

Taking into account that the IVIG seems to have had no effect on my condition I might talk to him about possible alternative diagnoses' at my next appointment.

 

[tmasters]

IVIg for MMN

I would be interested to hear of other peoples experience with IGG. Does it usually work? Do people find temporary respite from the symptoms following the infusion? Is it actually worth taking?

I look forward to your comments.

Dave,

Here's a good site from Johns Hopkins which explains MMN treatment options. According to this, IVIg is effective in 80% of MMN cases. There's also some dosage information:
http://www.neuro.jhmi.edu/MMN/treatment.html

Here's another one, from Washington University, which supports the 80%:
http://neuromuscular.wustl.edu/antibody/pnimdem.html#mmn

Also, Peg is spot on with the "foot drop". That's what it's called.

My symptoms are like yours and Peg's, but mine started in my foot/leg and moved to my arm. Typically, 80% of the time, MMN will start in the hand/arm and move to the leg. So I'm still MMN or ALS, waiting and wondering...

I don't know why the doctor could be convinced you have MMN unless you respond very favorably to IVIg. ALS doesn't. One indicator is to look for GM1 antibodies in your blood. Did you have this test? It's not conclusive, but an indicator.

-Tom

 

[Peg B]

To Dave and Arthur and Tom and Jake

Hi Dave,

Just want to wish you all well. I hope that treatment is working. Dave please let me know what the Dr. says. Tom and Arthur and Jake. How are you all doing?

I will call my Dr. tomorrow and ask for every three weeks for IVIG treatment as I got too tired this last month. I had treatment today and my nurse said, my "lung capacity is diminished." It sounds horible to me, but she assured me I just need to do deep breathing to exercise my lungs. So I pass this on take deep breaths.

Take good care, Peg