Arghhh More testing since I don’t test for GBS
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January 16, 2007 at 10:27 am
Hello and thank you for the advice about hot tubs.
I went to me neurologist yesterday and he says that I don’t have GBS signs no loss of reflexes, spinal tap clean, neurons firing, axonal tests ok too. so I only had, weakness in hands and legs with pain (he thought the pain was something else) that spread to almost complete paralysis for a week (spent in ICU but not on a vent) with IVIG, slow recovery (one month in rehab) still not walking and hands still weak and painful and not functioning well. Working on managing energy and effort. Today is much better after really resting up.
Any ideas for me? I had adjusted to the GBS diagnosis and am now feeling really scared that it’s something that will keep coming and I don’t know where to go from here. We are testing for Myasthenia Gravis now. We also said, maybe we’ll never know and it will just slowly get better like GBS. -
January 16, 2007 at 11:12 am
Hello,
I am just wondering if your neurologist also tested you for CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), the chronic form of GBS. If he did not and only tested for GBS, CIDP should be looked into. -
January 16, 2007 at 1:51 pm
I will ask about that. I have also found articles for gbs that state that if I was caught soon enough some of these studies will be negative. Slowly my stength is returning in my core which is very comforting and I will try to never push myself too much again. PT just left and I was able to stop it early because I am really tired.
Many thanks,
Claire -
January 16, 2007 at 3:24 pm
[QUOTE=santafe]Hello and thank you for the advice about hot tubs.
I went to me neurologist yesterday and he says that I don’t have GBS signs no loss of reflexes, spinal tap clean, neurons firing, axonal tests ok too. so I only had, weakness in hands and legs with pain (he thought the pain was something else) that spread to almost complete paralysis for a week (spent in ICU but not on a vent) with IVIG, slow recovery (one month in rehab) still not walking and hands still weak and painful and not functioning well. Working on managing energy and effort. Today is much better after really resting up.
Any ideas for me? I had adjusted to the GBS diagnosis and am now feeling really scared that it’s something that will keep coming and I don’t know where to go from here. We are testing for Myasthenia Gravis now. We also said, maybe we’ll never know and it will just slowly get better like GBS.[/QUOTE]
Did they test you for MS? -
January 16, 2007 at 4:14 pm
Yes, and all of the tests are negative for MS.
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January 16, 2007 at 5:12 pm
Santafe I have CIDP a mild case. I had a spinal Tap and Nerve biopsy and they were both normal. My neurologist zapped me with the Nerve test and she put a needle in a muscle in my leg and notice problems there. The muscle was working slower then it should have. Also my nerves wasn’t responding that fast either. Did not need any treatment and I am recovering in most parts except my hands that hasn’t changed.
I wonder if the IVIG treatment helps you it has to be something similar to GBS or CIDP.Good luck
Sue
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