January 21, 2011 at 4:48 pm
When I stop my IVIGs for just about 30 days I feel the tendons in my legs become stiff, very rigid. Specially near the Calcaneous.
Anybody fell the same?
AnonymousJanuary 22, 2011 at 8:27 pm
I have been receiving IVIG 1x/week for 7 months and in the last few months have been experiencing a lot of stiffness in both legs. My legs are so stiff – it reminds me of my mother, who suffered from Parkinson’s Disease. Dr. gave me a new/additional diagnosis code regarding it. Not sure if this is a side effect from IVIG or from a new (additional) medical condition. Awaiting extensive blood tests to determine cause of CIPD and possible other diseases, including my stiff legs. Will also probably do a nerve biopsy (which I have avoided so far) – may better inform my treatment regiment.
January 25, 2011 at 3:34 pm
Dr said if I want to know what causes it we need a biopsy. I’m not doing that for know.
I’m in hospital again, 3-day IVIG.
AnonymousJanuary 25, 2011 at 8:10 pm
About 2/3rds of the way thru my first of 2 days infusions? My ankles suddenly go AHHHHH! Almost to the point of being floppy. Win or lose? Dunno.
As for why? As I become ‘due’ for my next infusion, I tend to move around less and less, generally- and that increases edema [resulting from other issues] which builds up body debris in the muscles and vascular systems.
Massage of the affected areas can help, but avoid the heating pad at all costs! It was using a heating pad for one of those other issues that aggravated THIS problem and especially now.
Only thing I’ve found that helped has been interval exercises stretching and contracting these areas using a theraband or the like.
I don’t know IF any biopsy could ‘diagnose’ this issue? Punch Biopsies diagnose topical neuropathies. So, Is he meaning to do a sural nerve biopsy? If so, please readthese following articles:
[URL]http://emedicine.medscape.com/article/83199-overview[URL] Procedure & Cautions…
IF you go further and look up insurance coverages of this procedure? Well, many companies aren’t covering the procedure except in very rare circumstances. As not only the procedure, but the quality in the handling and processing of the biopsies are critical to their validity. Not to mention the potentials for infections. Usually, this type of biopsy is a Last resort or final resort for diagnosis.
I’d declined this procedure as I’d felt I’d met 90% of the diagnostic criteria w/o this procedure. After many years? I am still glad I’d declined!
I would ask your doctor about what other tests he plans on doing! If there are new things out there? I and I believe, others would love to know about them!
Good luck! Let us know what happens, please.
AnonymousJanuary 26, 2011 at 9:57 pm
Even though I was not too keen on having the nerve biopsy (sural nerve), it was recommended by the neuro because the insurance company refused to pay for some expensive genetic testing. I had numerous blood tests, EMGs, MRIs, spinal tap, without a definitive diagnosis for the muscle weakness and numbness in my lower extremities. I was aware of the permanent numbness that is caused by the biopsy, but I was already numb so I did not realize the difference. There is always a chance for infection, but luckily I did not have problems like that. However, I did have to take a week off from work and keep my leg elevated because of the swelling. The pathology report was very detailed and clearly defined the problem so a diagnosis was made based on the nerve biopsy. The insurance company did not argue about the IVIG treatment once they got the path report. It was worth it to have some peace of mind to finally get a diagnosis of CIDP and best of all it provided concrete evidence that could not be denied.
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