Originally Posted by Ivpound

Greetings...my name is Mark (46 yo male), and I am new to this wonderful disease/disorder/syndrome! At any rate, I had been hit by a car last october. Developed a blood clot (left leg)as a result, and put on Coumadin. Two weeks after coumadin therapy, I was awakened by a burning in my left leg (same as where clot was). Well, I was then checked for every circulation disorder known to mankind, since post thrombotic pain looks like neuropathy. However, everything was wonderful there.

So sent to neuroligist, who does another series of tests. All negative, but prescribes Lyrica. It does nothing. Burning pain, (with minor to intermediate joint joint pains), progress to my arms and sometimes head and back. I began to invite relatives over so that we could roast bacon on my extremeties for breakfast. Was taken off Lyrica, and put on Gabapentin. Went up to 1800mg, still nothing. I am a big guy, so they said I could take much more. I have a huge tolerance for these drugs, so all the side effects folks say they experience, are nil for me. I am thinking it is prescriptive **** dust. So all esoteric blood work comes back ok. I then speak to my Neuroligist, and he is at a loss. EMG, and all neurological tests are normal. Pain is primarily burning type....lots of yuks and giggles. However, the weird part is, when I stand, I dont burn, and when I go to sleep I dont burn either. If I am just sitting however....ooh boy, it is a humdinger! But if my arm is exposed outside of the blanket, it hurts pretty bad. So temperature piece is there. This first neurolgist comes up with 5 (count em folks, 5 differential diagnosis):

1. Post Thrombotic Syndrome
2. Sympathetic Mediated Pain
3. Brachial Plexopathy
4. Generalized Neuropathy
5. Saphenous Neuropathy (nerve behind knee)

After my appearance on the red carpet in Hollywood, I did not win any of the above. I was however offered a guest appearance on the show House, since they can't figure this freaking thing out. My request to be put into a Ketamine coma was also denied, which my wife was happy about, since I provide a valuable frying service during family functions.

So since I live in NY, and have the patience of a gnat, I find out who the best guy is to treat this. I get an appointment with Dr. Norman Latov, the King of Periphereal Neuropathy. Very smart man, big brain. I go through the examination and he is using tuning forks...tells me I have a minor neuropathy (if what I am feeling is minor, I will wear a dress to work). Without me describing my symptoms, he describes them. The man did not take my insurance, but luckily I am well resourced. I would give him a car if he could treat this.

So is this story over? Nah, he sends me for a myriad of more blood tests. Including retests of the panel. And some new ones added on. In the meantime, he tells me to ratchet up to 3600 mg of Gabapentin. I reach that dose on November 12th. From what I understand they want to try that for 6 - 8 weeks before trying something else. Dr. Latov said they could add Cymbalta or Elavil to that. I immediately asked for Heroin, and he said that was a no go. Gabapentin did slow down my processing speed a bit, but hey, so does single malt scotch. He also is sending me for a skin biopsy in January. He said if that does not proove conclusive, they would look for other neuroligical items. He said they find the cause of PN roughly 60% oif the time, and the skin biopsy is very useful for small fiber neuropathy, and its treatment. I then get a call that my B6 is low, and he starts me on that about a week ago. No other vitamins, just B6. Told me to maintain the 3600mg of Gabapentin (I would be much happier if it were Gabagool, like Tony Soprano) and see what happens with the B6.

So now you know my story...any thoughts re the above!? Have a great holiday,

Mark

Originally Posted by pabb

1) you should take up writing short stories....like mel, i laughed several times
2) where are the imaging studies of your back? please, dont tell me you were hit by a car and no imaging of your back was done????
3) check out a neurochiro...melody knows one in NYC