AnonymousJanuary 28, 2012 at 9:08 pm
Hi All: This feels like I am alone in an old building looking for anyone. It is strange having all the old messages from when I first joined in 2006 back up like this. I hope everyone has come back ok to the forum, though it seems pretty dead.
It has been a rough month. I found out that I have kidney cancer, though the good news is that we caught it early. I will have surgery to have the tumor removed. I really recommend periodic scans for everyone-there are no symptoms to this cancer and I only caught it because I had kidney stones. Failing to catch it early make the disease much worse-so keep checking when you can.
In addition my neuropathy has worsened. It got worse a few years ago, then stabilized and now is worse again than at any time since GBS. I went to the neurologist and had the Nerve conduction test. The neurologist said it was a typical pattern for GBS though I had the disease 6 years ago. Everything is slow. Unfortunately noone would give me the test after I got out of the hospital so we can’t tell if the situation is worse or not. He told me there were three possiblities: CIDP, degenerative disk disease and a worsening of residuals for unknown reasons. I have no increased muscle weakness so doubt it is CIDP, though he told me there are cases of CIDP with neuropathy and no muscle weakness. I believe it may be post-GBS syndrome but don’t know. But he also told me that I have jumpy reflexes which is not usual in CIDP or GBS. I will have a MRI next week to rule out degenerative disk disease and MS and see him again on Feb. 10. Depending on the results of the MRI he may want to do a course of IVIG just to see if it helps. Has anyone experienced a worsening like this? Given the cancer diagnosis I really don’t want to deal with neuropathy, but my doctor urged me to find out what was happening just in case I can do something about it.
Anyway, welcome back to everyone. I checked the site while it was down and missed the input and contact with you all. Jeff
AnonymousJanuary 29, 2012 at 3:52 pm
Sorry about you having kidney cancer. Hopefully they will get it all with your surgery and you make a complete recovery.
While reading your post on your GBS it was as if you were talking about me. I have gone from learning to walk with a cane to now being in a power chair. GBS is worsened and I have brisk reflexes. Dr. says it is not CIDP. Had MRI and nerve conduction, didn’t show anything, tried to talk neurologist into giving me IVIG with no success.
Please keep us posted as I would like to know the outcome of your MRI and kidney surgery.
Good luck to you
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