Downturn post ivig
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September 18, 2011 at 8:14 pm
Hi everyone..I haven’t written in a a couple of weeks now but i have been thinking about you all. unfortunately i have got even worse since ivig. as we still don’t have a firm diagnosis and dr. only ‘suspects’ it could be cidp i just wonder what else it could be, particularly what conditions which might be exasperated by ivig. i’m getting weaker and weaker. now my shoulders, forearms, head and torso and feeling sooo weak along with my quads. knees are very weak and painfu. post ivig i developed a lump in my neck about 4″ in diamater. had mri and nuclear testing. ruled out bone infection and dvt but still don’t know what it is.
on the 3 and 4th days of ivig i got severe pins and needles in my feet, unlike anything i’d ever felt. luckily it lasted less than a minute both times. my muscle spasms used to be mostly just in my calves and hands but now having them on my scalp and everywhere else. i’ve been off balance and had some tremors as well.
ugh…wish i could say the ivig worked and i don’t know for sure of the tx caused further decline or it would have happened anyway but i’m pretty bummed…..
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September 19, 2011 at 2:36 pm
Thanks. Yes, I remember that. My dr. will not issue any further treatments now though until I have the sural nerve biopsy, which I don’t want to do..but guess I have no choice.
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September 20, 2011 at 8:48 am
If you don’t want the biopsy maybe seek another opinion from a different neurologist. Some neurologists will do a skin biopsy. A skin punch biopsy is the easiest and least problematic. A skin biopsy can look for peripheral sensory nerve damage and death. It is a quite accurate measure. I refused the nerve biopsy as I heard that in some cases it does not heal properly and can cause more pain that you did not have before the biopsy. I guess I would look into it before getting something I did not want.
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September 20, 2011 at 3:09 pm
My neurologist only recommends sural nerve biopsies in those rare cases when a diagnosis is tentative and a biopsy is absolutely necessary. Even so, when he does order one, it is carried out by a neurosurgeon with experience doing that particular type of biopsy. It makes sense, since in effect it is neurosurgery. If you have to have one, see if you can have it done by a neurosurgeon. A lot of the bad biopsy outcomes I have heard about have been performed by neurologists or general surgeons.
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September 20, 2011 at 7:09 pm
The biopsy material should be propery handled and analyzed by an expert.
A positive sural biopsy may help with diagnosis. A negative sural biopsy would still not rule in or out anything.
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September 20, 2011 at 10:43 pm
Thanks you guys. DR. did say he would send me to UCSF for the biopsy, if I do that instead of doing it at Kaiser. he siad it is complicated and UCSF has the latest and greatest equipment so he would send me there. I must be lucky as I briefly spoke to another Kaiser neuro who said he would do no such thing and I wold have it done at Kaiser and claimed they do them all the time in San Francisco. I prefer to go to UCSF, if I do this. I asked if I oculd start with just the muscle biopsy and he said no as it wouldn’t be a complete study. Have most of you had a muscle biopsy?
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September 23, 2011 at 5:04 pm
Is plasma exchange and plasmapheresis the same? Also, did they perform any additional blood tests that indicated in advance you would be a good candidate for this 2nd line of treatment?
[QUOTE=GH-CIDP]If you recall, I didn’t respond to IvIg except perhaps for a temporary slowdown. I continued to deteriorate after two rounds of IvIg, then we switched to plasma exchange.
It is important to get the diagnosis right first, of course. You mentioned that you had normal CSF protein. This test can be negative for CIDP if taken too soon. Perhaps it’s worth repeating it.[/QUOTE]
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September 23, 2011 at 11:54 pm
Hello jc10,
For our purposes, plasmapheresis and plasma exchange are the same. It is somewhat more complicated, but let’s leave it at that.
At a minimum, the nurses need to know your hematocrit level. In many cases, they also need to ensure that your calcium level is adequate. In my case, the blood tests were CBC w/diff, Ca, Mg, electrolytes, creatinine, and BUN. The blood work is required frequently in the beginning (usually every treatment). One it becomes clear that your blood work is stable, the frequency can go down.
~MarkEns
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