Quote:
Originally Posted by vanjob
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
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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.
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