Questions on MMN

[JackB]

I am a new member and I am going through all the EMG's, blood work, etc and the Neuro has said it looks like MMN but could be ALS. (hoping for MMN)

It started in my left hand in July 2007 and slowly in my right and I went to an Orthopedic and he sent me to a Neuro to have an EMG on my hands and the Neuro said I had Carple Tunnel. Set up a time to have the Carple Release in Jan 2008 for my left hand (Pain went away but numbness is still there)

By late October 2007 I developed a foot drop in my right foot and bad cramps in my legs' calfs and feet.(the cramps have since gone away) Started to have problems climbing stairs but did not think this was related so I did not say anything to the Neuro.

In Feb 2008 I went to a new primary with all my problems and she sent me back to the first Neuro and he was stumped and he sent me to a Neuro at the "U of Penn" and been seeing him a couple times the last two weeks.
Still getting around ok, walking is tough, stairs a nightmare!

My questions are:
1.Does this sound like MMN?
2. My upper body is strong but my lower half is weak is this a sign of good or bad?
3. What do I need to know and where to look for straight info?
4. The Neuro is also talking about IVIg? (have researched but confused)
Is that something short term, long term, rest of my life? (only 53)

Any and all info GREATLY appreciated.

Thanks
JackB

[ronju99]

Hi JackB,
Sorry to hear you may be joining the club. I've had this for 5 1/2 years and still dealing with it. I have muscle waisting in left hand and also have left foot drop. I tried IVIG a couple years ago but didn't like the sinus problems I had with it and the VA wasn't much help in supporting me on that issue so I quit after 10 weeks. I've since changed VA hospitals and am now being examined at Haley VA in Tampa. I'll probably start IVIG in the near future.

I'll give you a link from Washington University in St. Louis that is experienced in these neuropathies; http://neuromuscular.wustl.edu/antibody/pnimdem.html#mmn. I hope the link works for you. The normal process for determining what you may have is a lot of ruling out other possibilities. I've had over 30 blood test, spinal tap , MRI of upper spinal column and numerous EMG/NCS. The spinal tap is VERY important along with Co-GM1 antibody test. The Co-GM1 blood test is ultra-sensitive and is specific for a variety of neuropathies. My IgM antibodies are eight times higher than the normal upper limit and is consistant with the diagnosis of MMN in over 80% of patients. See; http://www.neurology.org/cgi/content/abstract/49/5/1289.

Your questions are understandable as you have a lot to learn about these diseases but before one can give any reliable answers to your questions, we would need a lot more information on your blood work, central spinal fluid results and nerve conduction studies. Even then we are not medical professionals and you may get a wide variety of responses from other posters. There have been many on here that are not sure to this date as to what neuropathy they have that have been diagnosed from some respectable Centers only to have their diagnosis reversed at a later date.

My suggestion is to get copies of ALL your medical records as they are generated including blood work, EMG/NCS, any MRI's and doctors notes. You may need them for second opinions and your own knowledge as you walk through the process. Like many of us you may change doctors a few times until you find one that is not only knowledgeable but also compassionate.

Good Luck,
Ron

[Peg B]

Hi Jack,

Sorry you have to be here. Ron gave you great advice. Start a notebook (3-ring binder) and organize it with a varitety of tabs including Diagnosis (DX) bills etc. You will find this super helpful in the future. We put everything in heavy duty plastic binder folders so it all stays good. You can also get tabs for business cards so you have all the phone numbers.

I have been on IVIG since Jan 2007. I was first DX with ALS, then put on IVIG to see if maybe MMN. So the IVIG acts as a treatment and a test. I had side effects from the first dose. But meds took care of that. I have no Co-GM1 antibodies, and have not had a spinal tap. My EMG is positive for ALS but my progression is super slow (symptoms since 2002) and I have no upper neuron signs. Do you have a "conduction block?" That is part of the MMN DX. I found it helpful to read all of the posts on this forum when I was first introduced to MMN. Best Wishes, Peg

[JackB]

Ron
Thanks for the links and the info. My wife and I are starting to gather all the paperwork and test results now so it will less of a hassel later.

Peg
I THANK YOU also, I have read many of your posts on this site and the ASL Forums site and I have gotten a lot of information from your posts.

When you hear this from a doctor it goes over your head, but to hear these things from people that are having the same problems it helps to feel like I am not alone and there are people who care.

I THANK YOU both!!!!

Jack

[Peg B]

Hi Jack,

Thank you for your kind words. I hope things work out well for you. Please keep us posted. Take Good Care, Peg

[jillgrace]

jack,
I am also new to this site. I was diagnosed about 5 years ago w/MMN after being tested for everything under the sun. None of the neurologists I saw had even heard of it. I was finally diagnosed at Mayo-Scottsdale. I've been receiving IVIG for the last five years and it has been very effective. Very expensive though!

My symptoms are changing and I'm hoping someone might have some tips. Beyond the grip weakness and general lack of dexterity in my right hand, I have developed severe tremors in that hand. I've also developed latency when it comes to writing. Basically, if I want to write something it takes a little while for the command to get from my brain to my hand. Then once it does, my handwriting sucks!

[JackB]

Jillgrace

Thanks for your response and wecome to the site. It seems this is one of the best places to get information for all the people are in the same situation.

Most of my problems are in my legs sometimes they do not do what I want them to do. (Weak and unstable) My hands are OK just slight numbness. What kind of symtoms did you have when it started 5 years ago?

Had a CT scan done today, now waiting for the results. I am quite sure you have been through all the tests!!

With the IVIg does it give you your strenght back or does it take the pain and discomfort away so you can built the strenght back up? From what I am being told this is the path I will be walking and I am hoping I will be able to walk it. lol

Jack

[powder pig russ]

The handwriting issue sucks. I can no longer reproduce my signature from several years ago and filing our forms trying to write small between the lines is agonizingly slow if not nearly impossible. I've learned to adapt by getting others to write for me or use electronic forms to convey info on applications. Fortunately, people at places like the Post Office are kind enough to help out when needed.

From what I can tell, regaining strnegth is a misnomer. Get used to it because any improvements seem purely transitory. Go ahead and hold a wake (celabration) for those physical abilities you've taken for granted all these years.

Russ

[jillgrace]

I've been traveling alot lately and haven't had an opportunity to log on to this site recently.

Jack, how are you doing? Any progress with a diagnosis? You asked me what my symptoms were 5 years ago...I actually started having problems about 8 years ago. Cramps in my fingers, reduced strength, etc. It was written off as carpal tunnel. I had the EMG and was all set to have surgery when the workmen's comp folks required I have physical therapy first. I'm glad they did. I had a physical therapist who determined that there was something else going on. So that started the round of neurologists and endless testing. I live in a fairly small city, so the neurology community is pretty limited. The last one gave up and sent me to Mayo. there is a doctor there who is one of the experts on MMN. He told me that it could be one of two things, MMN or CIDP. The spinal tap would make the determination. Basically checked the antibodies that Ron mentioned.

It took about 3 years to get that diagnosis. By that time my symptoms were pretty advanced. I could no longer cut my food, carry a plate of food, write legibly, put my contacts in with my right hand, hand would "claw", etc. I'm VERY right-handed, so this was a pretty significant problem.

Once I started the IVIG, I saw immediate results. The first round lasted 4 days. Biggest problem was a horrible headache. They can adjust the rate of the infusion to combat that though. The infusion center I go to is wonderful. My cramps are pretty limited now. They start to get worse a few days prior to my next infusion. I've got some of my strength back, but I've also adapted the way I do things alot over the last few years. No problems with my legs, thank God!

There is no cure. IVIG is a stop-gap measure. There also doesn't seem to be a natural progression. The schedule of infusions varies greatly. Some people can go months between one. I get mine every 3 weeks. It took some time to get the dosage and timing right, though. I'm also on a higher dosage than recommended for my weight. The lower dosage didn't yield the same results.

Keep asking questions. There are so few doctors who are familiar with this disease. I had a hard time finding a doctor who had even heard of it. My local doctor basically follows Mayo's instructions and writes my orders every 6 months. He still doesn't know anything about MMN and he's supposed to be the best in town! Ugh...

Please let me know how you are doing and if you find any additional resources. I'm only 44 and have been dealing with this for so long. I would gladly participate in a trial, etc. but can't seem to find anyone who's actually doing any research.

[Peg B]

Hi,

The last few posts have concerned writing. Have any of you tried voice recognition programs? I have been using Dragon NaturallySpeaking since it first came out. Prior to that, I used Dragon Dictate in the begining of the 90's with students with special needs. It is wonderful and works very well. Everything you say is printed out on the computer. It works well on email and all the micrsoft office programs. In fact I have found only one program it did not work with and that was a very specific program for students with special needs. Anyway I am sure some of you would find it very helpful. Sincerely, Peg

[jillgrace]

Peg,
Thanks for the tip. I'll check that out. My biggest problem is that I can't write to take notes in meetings, etc. I can type though. Have you heard of any kind of PDA or something that will use a keyboard? I had a Palm Pilot years ago with a keyboard that folded out to full-size. It was perfect, but didn't have Word, Excel, etc. And it finally bit the dust. I haven't been able to find anything else since then. In fact, it's getting hard to find any kind of PDA anymore. Everyone keeps suggesting a blackberry, etc. I carry a Blackberry for e-mail, but it doesn't work to take notes, etc. Laptops aren't a good solution because I can't manage the touch pad and carrying around a mouse isn't practical...

[powder pig russ]

A friend of mine was given a pliable keyboard. You can roll the thing up like a magazine. It's essentially the soft laptop keyboard without the plastic shell. While Blackberry compatibility would be cool, it only has a USB cord on it so I guess we'll have to wait for that innovation or the one that projects a keyboard onto any flat surface to detect the desired input.

Speaking of Palm, I have a device (almost obsolete) that uses Graffiti for input of info. Much easier to scrawl the characters than trying to use those micro keyboards with clawed fingers of minimal dexterity.

[Peg B]

Hi Jack,

Alphasmart products have a key board and are compatible with all the microsoft products. Perfect for taking notes and adapting to a variety of needs. Below you will find the link. The DANA may be your best bet and I will quote below the description. They are terrific. Kids don't always like them because they are "different," but they are wonderful. I could go on but I will stop. It is a great company to work with.

Affordable. Starting at $350—a low total cost of ownership compared to standard laptops.
Portable and Reliable. Under 2 lbs.; up to 25 hours on a battery charge
Compatible. Write/edit Word, Excel, or PowerPoint files
Expandable. Run thousands of Palm OS applications

Also has beaming capabilites, for transfer of info from PALMs and to printers.

http://alphasmart.com/Retail/

The home page is alphasmart.com

Best Wishes, Peg