I would just like to point out that Hizentra is also immunoglobulin. It's just a subcutaneous version rather than IV. Here is information from the manufacturer:

Maria, do you find that it actually reverses some of the weakness or other MMN symptoms? I have never run across this blood product before, so I'm curious, as it's getting harder and harder to start an IV and I'm reluctant to get a port.

If you are new to MMN, be sure to do some Google searches for other online resources. This forum is very good but there isn't a lot of MMN activity.

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.

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*

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

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?

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..

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