Multifocal Motor Neuropathy

[JAKE]

Peg,

I went to see Dr. Vedanarayanan, professor of neurology at the University of Mississippi Medical center on July 3rd. Upon completion of his physical examination of me he said what I had didn't appear to be ALS, due to not having any stiffness in my body and the lack of spascisity in my body. He said the problems lies within the miscommunication of the nerve cells sending signals to the muscles but said he felt like it was confined to the spinal region, and that there was not a problem with signals being sent from the brain. They did quite a bit of bloodwork and I went back on July 28th for more bloodwork and my 4th EMG. He referred to my problem being in the area of Spinal Muscular Atrophy. He wants to wait for the results of the last bloodwork which is genetic testing to determine if he is going to recommend IVIG treatments again for me. He is also wanting to do a muscle biopsy and a spinal tap within the next 2 months.

[tmasters]

Hi Peg,

I'm doing about the same I guess. I only really notice progressive weakness when I think back a month or two and compare to what I'm doing now. So it's pretty slow and gradual, just like I like it. Still no DX for me; either MMN or ALS.

I have my final IVIg infusion scheduled for Friday. My neuro won't continue it unless Dr. Graves at UCLA recommends continuing. So I see Dr. Graves next week.

It doesn't seem that IVIg is doing me any benefit anyway. I'm about the same as when I started, maybe a little worse.

I'm so sorry to hear your breathing seems to be affected. Do you think it's MMN/ALS related, or maybe just a normal respiratory infection or something? I should improve if it's from an acute illness. Have you ever gotten an FVC score, where they quantify your breathing ability? This is something they would do at an ALS clinic, and I'm sure you've seen the FVC graphs of the PALS on the PLM site. This seems like one more way to track the progress of the disease.

Best of luck to you.

Keep the faith,
-Tom

[Peg B]

Hi Tom,

My nurse does not seem to be concerned, but I realized today that sometimes when I am talking I have to stop and take a breath. However, that is usually when I am upset or excited. I have had bouts of bronchitis and had tests on my breathing capacity, but never a baseline. I requested on Tuesday going back on IVIG every 3 weeks and they said OK. It could be I do have MMN and the less frequent treatment impacted my breathing. When I go to the ALS clinic in September, I will get it checked.

I too do not notice much difference except I am more tired and also more emotional. I cry for happy and sad stuff, even store clerks who are extra nice to me when I am tired can sometimes do it. YIKES! Do you have any of that. I know it is an ALS symptom but is it MMN too? I don't know.

Then again my husband had prostate cancer surgery April 1 and we found out yesterday from an MRI of his back, that something (could be just inflamation) is there and he needs to consult with his surgeon. (PSA count is negligible) But that stuff makes a person more emotional too. I find it difficult to figure out where to put the cause of this or that, so in the end I just read Nora Robert books and take my mind off of what I have no control over. That and/or beer work most of the time.

Keep me posted on what Dr Graves says please. (That was our family doc's name when I was a little kid.) I assume you are still working and not much has changed on that. Take good care Tom. Thanks for your concern, Peg

[Peg B]

Hi Jake,

It sounds like you have the lower neuron problems (from the spinal cord) but not the upper neuron (from the brain). Did the blood work before show GM1 antibodies issues? Did the Dr. mention a conduction block? I agree with Al it sounds like you are in good hands. Best wishes to you.

I also wondered if you and others have checked out the MMN forum. I found it very helpful, especially when I was first diagnosed with possilbe MMN. Take Good Care, Peg

[tmasters]

Originally Posted by Peg B

Hi Tom,
...
I too do not notice much difference except I am more tired and also more emotional. I cry for happy and sad stuff, even store clerks who are extra nice to me when I am tired can sometimes do it. YIKES! Do you have any of that. I know it is an ALS symptom but is it MMN too? I don't know.
...

Peg,

I suppose the tendency to be over-emotional is a symptom of any serious illness as we deal with grief. But I think the ALS symptom you're referring to "emotional lability" which is an UMN (upper motor neuron) sign. MMN only presents LMN (lower motor neuron) signs, so emotional lability wouldn't be present in MMN. Let's hope in your case it's just grief/stress you're feeling.

Yes, I check the MMN forum and find it to be great for MMN-related information, especially IVIg. Not much posting goes on there, though. BTW: I got freaked out one day when I read Chad Bowman's postings there, and then he posted on this forum later as CBowman for a while. Yikes! Well, that's not my story, but shook me up none-the-less.

Yup, I'm still working, walking, and living my life. My first grandchild was born on Sunday and we have something new and exciting to focus on right now!

Keep the faith,
-Tom

[crystalkk]

Tom,

Congrats, on the birth of your first grandchild.

[Peg B]

Thanks Tom,

I did not know the emotional lability was an upper neuron issue. So that answered my question about its relationship to MMN. I appreciate knowing such facts.

I also felt very sad about Chad Bowman. He laughed at my joke the first time I wrote on this forum. He said he was going to use it. I also saw his entry on the MMN site. It does make it such a small world with very many caring people.

Congratulations on your first grandchild. Which is it, a granddaughter or grandson? Our youngest daughter was married last August. She just got a teaching job with insurance, so we are hoping for a grandchild soon. In the meantime my niece lets me take care of her twin baby girls who will be a year old this month. It is such a win win because she has a 6 and 7 year old too. I watched the twins (last school year) in the morning for about 1 hour and 1/2 so she could be with the other two and get them to school and I got my grandma fix. I am so happy for you. Congratulations again. Sincerely, Peg