spinal tap results
AnonymousJune 1, 2006 at 11:26 am
showed no protien so I guess doc is ruling out gbs. Neuro thinks I have a hereditary peripheral neuropathy. What the heck? No one in my family has any problems. My nerve conduction was half of what it should be and the dr. who did it said that he thought I a subacute gbs. My legs and arms feel really weak and when I lay down my legs feel like they are humming/vibrating. I have been dealing with this since March and am getting really worried. Neuro and Physiologist both say it doesn’t sound like MS since my brain MRI was normal and MS does not typically present in all extremities as in my case.
AnonymousJune 1, 2006 at 2:08 pm
Normal protein doesn’t by itself mean it isn’t one of the GBS disorders. There are a number of tests that would normally be run–most of these disorders aren’t diagnosed primarily by tests, but by clinical presentation and by using tests to rule out everything else.
If there’s a hereditary disorder, it’s probably Charcot-Marie-Tooth. A quick search of the Internet will present a great deal of info on it. No one else in your family has to show any symptoms–it tends to crop up individually. No one else in my family had ever shown any problems but because my father and I both have high arches, it was one of the things that had to be ruled out before I was finally diagnosed with CIDP.
At any rate, understand that it often takes a while to diagnose any of the peripheral neuropathy disorders. It took eighteen months from the time I started having tingling in my feet before I was finally diagnosed with CIDP–and they had to rule out MS, CMT, Hansen’s Disease (leprosy) and a hundred other things before they diagnosed it.
Keep going, and know that you’re among friends here. We’ll do everything we can to help you.
AnonymousJune 1, 2006 at 2:41 pm
Thanks for your reply. I don’t know what I’d do withouth this forum. The worst part is waiting on these tests results and having dealt with this for so long. I certainly hope it doesn’t take 18 months!
How did they rule out CMT,MS? And how did they diagnose you with CIDP?
AnonymousJune 2, 2006 at 2:52 am
This forum and the one here in the UK are lifelines for many of us. Regrettably, often the patients know more than the doctors do.
In my case, they originally ruled out MS because the nerve conduction studies indicated that the reduction of nerve velocity was in the peripheral nerves rather than the central nervous system. (However, since then I’ve had additional problems and an MRI shows brain lesions so my neuro thinks I may also have MS as well as CIDP, although there are some CIDPers with lesions.)
They did a full genetics workup, which took eight months, and found that I only had a 30% likelihood of CMT, which was enough to rule it out. (Regarding length of time, things tend to move rather more slowly in the UK than in the US, but then our tests and treatment are covered by the NHS.)
But the final diagnosis came when my neuro sent me for a twelve-week course of IVIg, which reduced the symptoms. The idea was, if the standard treatment for CIDP works, then I must have CIDP. Don’t ya just love modern medicine!
Keep hanging on.
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