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.