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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:

MMN-diagnosed today.
 

Hi,

Got diagnosed today with MMN with conduction blocks.

The doctors want to do more tests to be 100% sure, and if confirmed, will do IVIg therapy.

Does anyone have experience with IVIg's here?

What are the reasons for MMN? Could any unrecognized deficiency be the main cause? heavy metals? Anything else which should be addressed?

Lo
 

I was diagnosed in 1990 at the age of 27.
Began with the normal hand tremors when holding a cup, drop foot and progressed to* general weakness in legs and arms.

Initially I had all sorts of treatments including* cyclophosphamide both IV and tablet form and plasma exchange.* None of these helped.

Only treatment that's really worked for me was IV IG which I only started in 2000 and now have 3 weekly.

My condition worsened gradually prior to ivig but since starting ivig it has improved slightly and stabilised.

Around 5 years ago I decided to change my lifestyle dramatically.* I began moving to a predominantly raw food lifestyle.* I cut out wholegrains, cereals, sugar, alcohol and all tinned and packet foods, ie processed.* My weight reduced to 60kg.

I began exercising, mainly strength work and from a very low base, bicep curls in my left arm were done with no weights just the movement.

I took up mountain biking, just very easy flat fireroads and nothing difficult.* I knew cycling well as I used to race in my early years. This allowed me to exercise without the problems associated with walking, balance etc.

It was amazing how I progressed.* I can now cycle 60 miles including technical singletrack and up huge mountains.*

I still have dropped feet, unable to properly use my calf muscles and have problems with my fingers etc but I workout almost daily targeting my weaknesses with strength training.* My legs and walking is far from normal but my aerobic fitness is sky high to compensate.

This is my story anyway, drugs can take you so far but you can do so much for yourself with a healthy lifestyle and exercise. Never give up and start off at zero if you have to and progress slowly at your place.** Never beat yourself up over failing and always keep in mind your goals.

I'd be happy to share more if anyone is interested.

Good luck to you all and enjoy your next challenge..

Mmn foot drop and fast decline in both legs
 

Hi Ellelee,

I am in my 60s and am presenting very similar to you. I am wondering how you are and if anything has helped your recovery? I was on Immunoglobulin therapy for 3-months which didn't help my initial symptoms (weakness and foot drop in 1 leg). I went off and was put on chemo and have declined (within 6-months) to the point where I can no longer walk. I can stand for a few seconds of that. I have to use a wheelchair. My antibodies just started dropping so I'm hoping to stabilize and gain some mobility. I am wondering where you are in your journey and if anything has helped?

Anyone have a similar experience? Needing words of encouragement. I want my life back.


QUOTE=ellelee;466676]I have just been diagnosed with MMN myself. I'm only 23 years old and I've been having weakness in my left leg. I can't get up, walk, stand for long periods or climb stairs. I've found out that its now in both legs and both arms. I was told that i had a viral infection and my white blood cells attacked the virus then saw my nerves as a threat and attacked them as well. I also suffer with drop foot syndrome. I'm very miserable and my knees keep giving out on me. When I fall i can't get myself up someone has to literally pick me up. I was suppose to go see another Dr. to get a second opinion,but they can't fit me in. I believe that i'm having the iv treatment done thursday. I'm very scared and nervous. I want to be cured so i can pick up my son and run after him. Can anyone tell me what i should expect from the treatment?[/QUOTE]

MMN and Muscle Atrophy
 

I haven't officially been diagnosed yet as I need to start IViG treatment as soon as my doctor can organise it however, I know I have MMN.

I have muscle atrophy of my right hand (no thumb muscle) which means I cannot pick things up properly, have difficulty writing and cannot do up buttons or zippers or turn a key in a lock with my dominant hand. I also have difficulty using a knife to cut up food.

My fingers cramp as does my right leg and I am constantly lethargic.

It's taken 10 years to get to this point where I may finally get an answer to my problems, I just wish it hadn't taken so long as if it had been detected earlier I may not have had muscle wastage and may have recovered much quicker.

I would like to know more about your situation
 

Are you still doing the IVIG treatments or any other traditional treatment?
I was diagnosed MMN in July 2014 and started IVIG treatments in September 2014 - 5 days treatment 2 grs per kilo of weight. Since then I did every six weeks again 2grs per kilo and now is every 4 weeks - 2grs per kilo.
I see some improvement but not much, I have weak calfs, some of the muscles in my legs are with atrophy, and the same for my right hand.

I am also trying to exercise instead of Football and tennis now I am cycling to the office, running (slowly and short distances) and swimming. I also tried yoga to strengthen my body. Nevertheless I see the cramping increasing more and more.

In the meantime I have tried for a few months a gluten and caseine (milk protein) free which gives me more stamina but it's very hard to follow. Currently I avoid these two proteins but I don't do a strict diet on those.

What are your experiences with training, diet and traditional treatments.

Thanks a lot in advance for sharing your experiences.

Vato

Mmn
 

July 26, 2016.
Yes, I infuse now 9x per week, 4 grams (20ml) per infusion. It really has slowed the weakness. I'm one of 350 people worldwide who uses Hizentra for MMN, according to my Neurologist at U of M, Michigan.