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Question for Dennis B. about PN

Posted by Tony S. on 5/02/02 at 23:48 (082242)

My Dr. said there are over a hundred causes of PN. Did your Dr. find your cause and if so was he/she able to treat it? (Just curious) THANKS

Re: Question for Dennis B. about PN

Dennis B. on 5/03/02 at 13:25 (082320)

After many blood tests and emg's and ncv's on the arms and legs, my neurologist recommended a sural nerve biopsy. That was performed on Feb 18th and the pathologist at the teaching hospital where the actual biopsy was performed, diagnosed vasculitic neuropathy. That is Peripheral Neuropathy caused by vasculitis. It is an autoimmune disorder wherein the T-cells and the Leuko(something or another)cells are attacking the nerves and cutting off the blood flow to them, thereby damaging/destroying them. As to treatment, long term use of Prednisone or Cyclophosphamide were offered and I declined due to the very nasty side effects of them. Since that biopsy, I have developed a tendency to drop things, run into things while walking and have tremors, hence the dr. is concerned that i may also have ALS. The 'jury' is still out on that one. Generally the sural nerve biopsy is a last resort kind of thing, there are also muscle biopsy's available, as I recall reading elsewhere. You may wish to check out http://www.neuropathy.org . to seek answers on your condition. You sign up to access the bulletin board but if you are concerned about them contacting you, you can give them a false name and address. The only time I have been contacted by them is via a quarterly news letter sent regular mail. Good luck to you and please advise if you have any other questions, I will give you my e-mail address if you so desire. DENNIS

Re: Question for Dennis B. about PN

Dennis B. on 5/03/02 at 13:42 (082322)

Also see my post under the topic of 'had surgery on both feet and lost my job'. DENNIS

Re: Thank You Dennis !!

Tony S. on 5/04/02 at 03:27 (082382)

Thanks for the info. I'm still in the early stages of diagnosis and Lyme disease has been the only thing eliminated thus far. I get the results from all the other blood tests next week and will learn more. Was your case a sudden onset or did it start slow and gradually get worse. I'm 34 and have had good health all my life until this PN showed up. The Dr. termed it as MILD, but I'm still very concerned. THANKS AGAIN !!

Re: Thank You Dennis !!

Dennis B. on 5/04/02 at 16:20 (082413)

My symptoms were a real problem in early 1999. Started with the left foot, then to the right foot, then up the legs. Subsequent to that it spread into the arms and hands, in 2001 and now this year into the tops of the shoulders and the base of the neck. So, obviously a slow progression. Thought that the intial problem of the sore foot was due to the fact that I owned my own retail business, walking on concrete, waiting on customers, etc. Of course TTS does not involve the arms, hands, shoulders or neck. Doubtful, but unsure if it involves the legs. Good luck to you and if you need any one on one info, let me know and I'll send you my e-mail address. DENNIS

Re: Question for Dennis B. about PN

Dennis B. on 5/03/02 at 13:25 (082320)

After many blood tests and emg's and ncv's on the arms and legs, my neurologist recommended a sural nerve biopsy. That was performed on Feb 18th and the pathologist at the teaching hospital where the actual biopsy was performed, diagnosed vasculitic neuropathy. That is Peripheral Neuropathy caused by vasculitis. It is an autoimmune disorder wherein the T-cells and the Leuko(something or another)cells are attacking the nerves and cutting off the blood flow to them, thereby damaging/destroying them. As to treatment, long term use of Prednisone or Cyclophosphamide were offered and I declined due to the very nasty side effects of them. Since that biopsy, I have developed a tendency to drop things, run into things while walking and have tremors, hence the dr. is concerned that i may also have ALS. The 'jury' is still out on that one. Generally the sural nerve biopsy is a last resort kind of thing, there are also muscle biopsy's available, as I recall reading elsewhere. You may wish to check out http://www.neuropathy.org . to seek answers on your condition. You sign up to access the bulletin board but if you are concerned about them contacting you, you can give them a false name and address. The only time I have been contacted by them is via a quarterly news letter sent regular mail. Good luck to you and please advise if you have any other questions, I will give you my e-mail address if you so desire. DENNIS

Re: Question for Dennis B. about PN

Dennis B. on 5/03/02 at 13:42 (082322)

Also see my post under the topic of 'had surgery on both feet and lost my job'. DENNIS

Re: Thank You Dennis !!

Tony S. on 5/04/02 at 03:27 (082382)

Thanks for the info. I'm still in the early stages of diagnosis and Lyme disease has been the only thing eliminated thus far. I get the results from all the other blood tests next week and will learn more. Was your case a sudden onset or did it start slow and gradually get worse. I'm 34 and have had good health all my life until this PN showed up. The Dr. termed it as MILD, but I'm still very concerned. THANKS AGAIN !!

Re: Thank You Dennis !!

Dennis B. on 5/04/02 at 16:20 (082413)

My symptoms were a real problem in early 1999. Started with the left foot, then to the right foot, then up the legs. Subsequent to that it spread into the arms and hands, in 2001 and now this year into the tops of the shoulders and the base of the neck. So, obviously a slow progression. Thought that the intial problem of the sore foot was due to the fact that I owned my own retail business, walking on concrete, waiting on customers, etc. Of course TTS does not involve the arms, hands, shoulders or neck. Doubtful, but unsure if it involves the legs. Good luck to you and if you need any one on one info, let me know and I'll send you my e-mail address. DENNIS