NeuroTalk Support Groups

Hi my name is Jay and I came across this forum when I googled neuropathy forums. I am 46 years old and have a wonderful family including one son (Dmitri) age 5 who just started kindergarten earlier this month. I work as a tax accountant (about 25 years now) and build custom cars as a hobby when I have spare time. (we are currently building my son's '56 Dodge Custom Royal and I have an unfinished '50 Hudson Coupe).

I have spent time since August of 2006 in and out of various neurologist for many reasons (mostly with the Mayo clinic here). I began to have nausea, dizziness, short-term memory issues, pain and tingling in my feet (eventually moving into my hands), migraines (which I have had for many years now), dystonia in the upper right quadrant, etc.

I have had 5 MRI's, every blood test, DNA tests, EMG's, etc. again mostly through the Mayo clinic here. I never got the results, just the neurology resident telling me they showed nothing. The resident doc talks with you then leaves the room once or twice to go talk to the real doc! Mayo likes to give you a million tests, then tell you very little. I have had 2 of the test for memory/cognition each 1 year apart, with a noticeable decrease in memory ability. I asked him to look into my foot and hand pain and he ordered one EMG (I hate those tests) on my left leg only and told me it showed no peripheral neuropathy and told me to see their shrink. I did this to statisfy them and the shrink told me I was fine (which I already knew). So, Mayo said I could see them every 6 months or so and left it at that, they didn't know what else to do. I was ****** and decided never to go back there (others have told me of similar treatment). According to the radioligists, my MRI's, showed atrophy overall in the brain (and ventricles much larger than they would expect for my age), with which the radiologist stated that it was what they would expect to see in an 85 year old man, or someone with Alzheimers. The Mayo doc said "he didn't think I had Alzheimers."

So I go back to my old neuro doc (associated with barrows institute, which I quit seeing when I went to Mayo) and after an examination said point blank, you've got small fiber neuropathy. He concurred with my dose of Neurotin at 3600mg a day (which his partner had recommended before I went to Mayo) and added a 100mg dose of Tramadol to it. The Tramadol has no effect. Pain is getting worse, but I can still tell hot from cold, though I don't do so good at the vibration tests. I use a lot of post-it notes and such to help me remember things and my wife helps as well. I have slowed my work load down some and this helps with the dystonia. Sometimes I lose my thought mid sentence, but enough folks have seen it that they don't freak out anymore.

The GI doc at Mayo dx gastroparesis which he believes must be associated with damage to the Vegas (sp?) nerve. I currently take domperidone and prylosec for it.

In 2004 I had a disk blow out at C-6/C-7 and a subsequent fusion. They had to pull 3 fragments out of the spinal cord during the operation. I have a Chiari Malformation at 5mm length (as of late 2006), which then didn't seem to be restricting any flows.

Some history: I have been in 12 auto accidents, 3 were totals. I have had 2 small motorcycle accidents. I green-broke horses from the age of 8 til 15, been kicked in the back, drug through fences and stomped in the chest at age 8. My step-mother was very fond of disciplining using an electric cattle prod. I grew up in the 70's, so partying with drugs was normal, though my favorite was dropping blotter acid directly into the eyes. Yeah, kind of stupid as I look back on it and can't say I would recommend any of that now, hopefully, I'm a bit wiser with age! lol And unfortunately, may have contributed to my extremely high tolerance for narcotics (though my father had this also).

I have never broken a single bone in my life!

So, life goes on, you compensate for your defiencies, and do what you can to help your symptoms. Watching my son grow up is extremely therapeutic.

Sorry for the long diatribe........but hello

Jay