Hi Brian – It’s good that the weakness and numbness is responding to the IVIG. I get IVIG’s also, I sometimes get spasms in my legs, but not very often. The shock like sensations are probably nerve pain, which alot of people experience. IVIG’s will not control the nerve pain. Tell your doctor about it and he should be able to try some medications for the nerve pain. There are anticonvulsant drugs, as well as anti-depressants that are used for nerve pain. Hope you get relief from the pain and spasms.
Clare in Michigan
[QUOTE]Here’s a list of the medications he’s on:
Dilaudid – 2mg. 3/day (for pain management)
Lyrica – 50mg. 3/day (for nerves)
Valium – 5mg. 2/day (for muscle spasms)
Miropex .125mg. 2/day [/QUOTE] May I suggest the following:
Lyrica – increase to 125mg 2/day (very good for pain – especially muscle/joint pain)
Change from Valium to Klonopin – 0.5mg (4/day) morning; afternoon; and 2 before bed (approx 1 hr before bed)*
Vitamin K with calcium – helps relieve overall pain, and helps with spasms (an over the counter item, but make sure you get vitamin K with calcium).
*Klonopin (clonazepam) and valium (diazepam) are both benzodiazepines – not much difference. However, Considering the metabolic effects, the present study shows that clonazepam (klonopin) is more effective for both central and peripheral benzodiazepine nerve receptors.
Doctors are reluctant in changing medications, or perscribing increase dosages, but you’ve got to convince them you are aware of your illness, know about the medication(s) you are suggesting, and keeping them in mind of who is paing his/her bills. It has always worked for me.:)
I have muscle spasms in my legs primarily, just like you I can watch the muscles moving. But I am so used to it, that I can usually ignore them. I am not going to lecture you about smoking (I actually took it up two years ago to help me with the unbearable pain in my feet, which it did.) Of course, I had been a smoker years ago before I got CIDP.
When I started up again, it was one of the few “normal things” I could do at that time. I couldn’t walk, couldn’t read (cataracts), had a hard time watching TV, & smoking was something I could actually do. I just wrote this so that you don’t get more smoking lectures, life with this disease is rough enough, maybe we need to seek pleasure in any small way that we can? But yes, muscle spasms are definitely from the CIDP!
My spasms are only in my legs and started right after the onset of GBS had stopped. Numbness stopped about halfway up my chest and so didn’t affect my breathing or eating-although I lost my appetite for at least a month. My hands also went about 50% numb and about 40% motor control. My lips and tongue went about 20% numb. So not a bad case as far as I’ve been reading here. My spasms have increased and they have me on some muscle relaxers to help. It can keep me awake at night. It is a contraction pulling my whole leg up at the hip about 6-12 inches. From what they are telling me here the spasms and the facial numbness are not typical of GBS.