Everything tunnelPosted by Kris on 5/15/05 at 00:33 (175053)
How on earth can I have EVERYTHING TUNNEL?
Ok, this is getting REAL OLD - first they said I had tts, then no, its periphreal neuropathy - cause unknown - now I go see the neurologist who says, no, I might have some neuropathy underneath, but that I have tts in BOTH feet, and CARPAL and GUNYON's TUNNEL In my left hand.
HOW on earth can I possibly have just up and developed what I call everything tunnel in a matter of months?
I have had positive EMGs, and have another set on Friday. They are torturing me here.
Anyone got any thoughts on this? UGGGGGGGGGGG
Re: Everything tunnelKris on 5/15/05 at 00:41 (175055)
I'm seeing 4 docs - my GP, who doesn't have a clue about feet but at least admits it, my podiatrist, who thought I had tts, my orthopedic surgeon - probably the best, who thinks I have neuropathy, and then my neurologist, who I don't think likes my orthopedic surgeon's opinion very much.
Re: Everything tunnelJulie on 5/15/05 at 03:33 (175061)
Kris, other posters in the past have mentioned having Tarsal and Carpal Tunnel syndromes together. Since both (and presumably Gunyons) involve irritation of nerves, your neurologist, of all the specialists you've seen, is probably in the best position to look at the whole picture and advise you. I hope you will get some help: it must be very painful.
Re: Everything tunnelJeff S on 5/16/05 at 10:44 (175122)
kris you could look into what is called charcot marie tooth syndrome. Ask your neurologist about it, and do some research yourself. It often is first diagnosed as a idiopathic neuropathy. then can be misdagnosed as TTS. Just a suggestion .....Jeff
Re: Everything tunnelKris on 5/17/05 at 01:41 (175167)
I read about that - but something called HNPP sounds a bit more like me. I dunno. I hope they figure it out soon. I know that my EMG latency looked like CMT.
I'm going to let them do these blood tests and then if they can't say what's what, then I will ask about it.
I know that the neurologist says I definitely have an EMG that shows tarsal tunnel in all branches. I've got to have EMG's that go higher up on Friday. I so dread it. They kill me with pain.
Re: Everything tunnelAngela on 7/01/05 at 00:56 (177620)
Kris, I have a similar problem and have been searching for answers too. My problems developed over about the last 5 years though. I have bilateral carpal tunnel, cubital tunnel and tarsal tunnel. I had symptoms long before my EMG's turned positive. I just had my first tarsal tunnel surgery last week, don't know how it will turn out. Had surgery on everything else except one cubital tunnel which is still very mild. I understand your frustation completely. Check with older family members who may have thought (wrongly) they had circulation problems when they experienced hands or feet 'falling asleep' to see if you may have a hereditary problem. I have just had the blood test for HNPP, results are not back. It costs about $300 if you go through Athena Diagnostics Patient Advocate Program. Insurance may not cover HNPP or CMT genetic testing which Athena also does. You might want to check to see if you have had a basic rheumatology workup and tests for B12, thyroid, diabetes and folic acid too. Your neurologist most likely has done all the latter tests. I hope you are able to find answers.