Bad muscle spasms & cramps

Hi all,
I am starting to have second thoughts about how good my neurologist’s job is doing on me…
He is feeling good about how well the plasmaphereses has helped on my motor nerves, (I have been having plasmaphereses for one week per month for about 10 months now), in that I can walk better, though still need the wheelchair for long distances due to fatigue. That “F” word comes on me so quick now, after a day out in the wheelchair I have to come home and sleep.
Bit, in the progression of the CIDP, it went into my autonomic system, (small
fiber atrophy), hitting my “guts” bad, and every time it hit a different ogan, I’d be put on more pills pertaining to it. (It’s hit the nerves controlling my diaphragm, heart, digestive/swallowing system, bladder, and bowels.) It has left me with shallow breathing and lung infections every two months, tachycardia now controlled by pills, bad nausea all the time with pills helping to “dump” the stomach now and anti-nausea meds used all the time, eassy choking and fluids/food coming into my windpipe so that I am told by nurses this is where lung infections will come easy to me, pills to make my bladder spasm so I can urinate, though having incontinence now, as well as bowel incontinance has started.
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But here is what has me “scratching my head” and finding what he said a bit incredulous. I have had muscle spasms for about 3years now. I have been reading your forum now for about 9 months, when I found you on the net.
It seems like 95% of you all have muscle spasms of some type.
I get them all over my body, and besides feeling them, many times I can watch them as the muscles in a certain area like my arm or leg come up and spasm and twitch for about a minute or so. About two years ago, one of the doctors on my team put me on Flexeril 10mg three times daily. That seemed to help me, and the spasms calmed down.
But of recent, they have come back with a vengeance! The worst areas are my legs and my fingers. When I lie down at night, you can see the muscle in my legs come up and “knot up”, causing much pain. I have to jump out of bed and keep trying to find some movement to stretch it in the right place to stop the spasm. It wakes me up while sleeping many times, and has left me to sleep in a fetal position, to keep them away. And in my fingers, I smoke and often have the cigarette between my index and forefinger, and out of the blue those fingers will spasm and sometimes I drop the cigarette…painful and dangerous…
I get lung infections about every two months, and last month had a bad one, and was back and forth with my Primary Care doctor about it. In the middle of it, I told him about how the muscle spasms had become very bad now. I reminded him I was on the Flexeril, and asked him if either the dose could be increased or a better med could be given. He took me off the Flexeril, and gave me valium instead, (of which is not working …).
So, I called my neuro, mentioned the very bad spasms problem, mentioned about the flexeril to valium.
HIS RESPONSE WAS THAT MUSCLE SPASMS WAS NOT A SYPMTOM OF C.I.D.P., AND THAT I MUST BE HAVING AN SIDE EFFECT TO ONE OF MY MEDS.
I find this incredulous, since watching this forum for a few months, EVERYONE seems to have muscle spasms, some slight and some bad.
WHAT ARE YOUR VIEWS ABOUT THIS?
I would be very interested in some of your responses, especially from some of you getting the bad spasms. I want to copy some of the responses from you guys, and HAND IT TO MY NEURO, (looking at him cross-eyed, as if “what the hell are you talking about???).
Thanx for your responses,
Kedaso