Welcome to NeuroTalk:

To make a new thread of your own, you need to be on the first page of the forum it is destined to be on.

This forum Neuromuscular.....has this link:
http://neurotalk.psychcentral.com/forum19.html

In the upper left is NEW THREAD button. Click that and an
text box will appear and you type in your question or statements that way.

Each forum has a first page... Click on NeuroTalk Support Groups at the top of any page and you will then link to the main index with all the forums listed.

multifocal neuropathy with conjunction block
 

Last December I woke up and could not move my left arm, it was so weird I put up with it thinking may go away it didn't
I went to doctors and he rushed me to the hospital thinking it was a stroke
after many different consultants and doctors I was diagnosed with multifocal neuropathy with conjunction block my left hand now looks like a skeletons with no muscle at all on it Ive lost about 30% of my upper body muscle mass and now it is going into my legs,i go for IVG every 4 weeks for 5 day treatment
I have the most violent headaches and muscle cramping sleep if any is very little due to cramping as soon as I lie down to sleep.My walking now is getting bad.I sent off for PIP disability and it took over 7 months to come back and today I got the decision makers decision on me
With my condition and fading health I thought I would get the higher ones on both I got standard only.im sure they are on a different planet My consultant and doctor will go mental when I show them,and didn't get mobility at all
am I angry you bet will I appeal you bet
thanks for listening needed to get it off my chest
thanks Garry Leeds

Hi Garry

Do you associate your headaches with your IVIG treatments, or do you have them all the time? If they happen after your treatments (I tend to get them two or three days later), often this can be prevented by slowing the infusion rate. Also make sure you stay hydrated.

If your headaches happen all the time, all I can say is that is not a standard MMN symptom. However, symptoms are all over the map among MMN sufferers.

Cramping, on the other hand, is a very common symptom. Some people find some relief from magnesium or quinine. In the US, the FDA has banned quinine supplements. Some people drink tonic water instead. Speaking for myself, while I do like tonic water, I don't drink it because of the sugar/artificial sweetener content. I take magnesium supplements (magnesium malate — magnesium oxide, a common supplement, is not very bioavailable). I also pickle in a strong Epsom salts bath two or three times a week. Epsom salts are magnesium sulfate.

I have also found exercise to be helpful with both twitching and cramping. I'm lucky in that my legs are not very affected.

*edit*

Question
 

Has anyone been diagnosed with MMN who had prior surgery involving titanium hardware to stabilize their spine?

I am new to this post. Diagnosed with 'MMN' this spring, 2014. Had my 4th IVIG a week ago, once every 4 weeks. I think I'm seeing some small improvement in my right leg at least. It did start for me in my legs from the knees down to my feet. I'm wondering if anybody has had much luck with diet modifications, immuno therapy etc.???

The only thing that more or less reliably helps anyone is IVIg. Only 70% of people respond to it, however. The next most common current treatment is rituximab. Results are spotty. Three MMN patients have received hematopoietic stem cell transplants. One sees improvement after two years, one sees no change after two years, and one has been too recent to show any results yet. A fourth is going for his transplant later this summer.

No one has shown definite improvement due to other alternative therapies, although it can't hurt to do things to improve your general lifestyle and support your overall health. Personally, I went on a very low carb diet three and a half years ago. The progression of my MMN has slowed and somewhat stabilized, but it's impossible to say whether that is a result of the IVIg, the diet, or various supplements. I can say that I have not had a cold or any other illness in that time, despite other family members having regular bouts of crud.

IVIG Treatments
 

Sorry to hear you have been diagnosed with MMN, at least it is not Lou Gehrig's disease. That was my original diagnosis, but was diagonosed with MMN in January 2010 and started heavy IVIG treatments. 220 grams every four weeks for the first few months.

Improvements in strength were noticed shortly after, sorry I can't remember a more specific time frame but within six months. I was unable to stand on my tip toes or do a calf raise(lifting my entire body). Now I can without any problems, my left leg was affected more than the right.

My left hand is weak without IVIG treatments. I now get 110 grams every four weeks with infusions done at my home starting this year. I use to have to go to an infusion center.

IVIG treatment is the best remedy for MMN. The IVIG restores anti-bodies and prevents further nerve damage. I did read someones website, it is all about a guy diagnosed with MMN and he only eats organic foods and does not get IVIG. He claims he is doing fine with diet alone. Please remember this is only one person I have ever heard about but this is a very rare disease and as you can tell from the posts here that very few people even discuss it. The troubling thing for me is that I will always need these treatments and they are very expensive. My insurance companies gets billed around $30,000 per treatment, luckily the cap on insurance policies has lifted. Hope this has help, just remember to stay positive and live each day to the fullest.

I recently had a blood test to rule out peripheral neuropathy due to diabetes. It came back positive for MMN. I have already been diagnosed with acquired peripheral polyneuropathy. The neurologist wanted to start me on IVIg right away. I told him I wanted a second opinion since I have absolutely no symptoms of MMN. So in January 2015 I am going to the Univ of Washington to see another doctor for another opinion. Probably get another blood test, which is fine with me. There is only one lab value on the test that pointed to MMN. It was Asialo-GM-1 Ab (IgG) Results were 1:200 Reference range is <1:100 titer.

hi people
 

hi all my name is aaron.
I'm not much for typing or grammar so bear with me.
here's my storyround 2009 I started noticing. a little bit of shaking in my hands mostly left didn't realize at the time but it was due to weakness.i archery hunt so that's when I first noticed it.. went to the doctors about 2012 and I could still pull back my bow but no longer hit damn thing.due to severe shakinghe told me it was probably hereditary and that I shouldn't worry about it.. 2013 came around and I started having a hard time carrying around me son .. when he was about 6 months old.I couldn't muster up the strengthstrength to put him in his car seat 1 morning ..this is when I knew something was wrong went back to the doctor he referred me to a neurologist after a few visitsI knew the way he looked at me it wasn't good I already done some research myself you told me I should go to the University of Minnesota they diagnosed me with ALS in one visit went back to my previous neurologist he agreed and said that's why he sent me to the University of Minnesota he just wanted to be sure.. obviously it was not happy with this diagnosis and neither was my family my father insisted that I go to the Mayo Clinic very happy I did after a few days down there..I knew I was in great hands they have a very impressive system down there.. and anybody with mixed diagnosis or are unsure of what they have I don't care if you live in Texas make the trip to the Mayo Clinic..
they eventually diagnosed me with multifocal motor neuropathy. I went home and told my local neurologist the news he disagreed but humored me and changed his diagnosis and prescribed me IVIG treatments..my results at first we discouraging no real noticeable improvement for 3 months it was discouraging reading other people's success within 7 days noticing strength increases..during my first treatment I ended up getting meningitis which sucked..I had a severe headache the night before at my niece's birthday party after my second day of treatment ..I woke up the next morning my head was pounding and I couldn't roll over in bed because I didn't know which way I needed to go it was a pretty insane feeling figured it was time to go to the hospital yep meningitis..they changed the brandfrom gamma something to bivagam or something like that.they also give me a small dose of solumedrolaspirin and benadryl. haven't had a problem since its been over a year.. I've lost a lot of arm strength... I hand jars to my wife for her to open them for me.. my buddies typically open my beers for me. I've also lost a lot of strength in my lower back it's almost like I have back issues and I don't.. fatigue seems to be a problem muscle fatigue that is standing is more of a problem for me than walking not so sure why but I know its not normal..
does anybody else suffer from I guess you could say pain....almost like muscle aches caused by a flu type fever...with a certain amount of tightness were you constantly feel the need to stretch... I thought the easy fix would be hydration turns out does help a little bit but not enough to take away the frustration of achiness constant achiness..I'm not a big fan of taking pills muscle relaxers pain killers Exedra...every now and then I'll take tramadol..problem in that takes care of all my problems for the day but the next day I feel even worse then it takes me me 3 days to feel the way I felt before I took tramadol.. so not really worth it.. if I feel extremely tight I'll take a muscle relaxer before bed. seems to help..but like I said I don't really like taking them...so if anyone else has this issue I would like to hear about it and if they have a solution it seems to work for them I'm curious as to what it is..

during my IVIG treatments I've been anxiously waiting for someone to sit next to me that doesn't have MS and has something similar to what I have at least.. haven't run across to anybody yet so I guess that's why I'm here..anybody here from Minnesota?

Welcome mn aaron. :Wave-Hello: