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[QUOTE=6foot3;2754849]cathypem.......You said every test imaginable so i take it all Blood Tests as well as MRI on spine for compression on nerves and also to see for MS lesions.Has he also had EMG and NCV tests to check for Axonal or Demyelinating?? Lastly what about a Lumbar Puncture (spinal tap) to check for about 10 different perameters in the fluid.

If all these have been done.... perhaps taking him to a MDA clinic as they have specialists who deal with these type things than a neurologist who has to deal with all neurological diseases that don't even apply to your husbands case. Again did your husband have a Lumbar Puncture and these other tests done...

Take Care....[/QUOTE]

Thanks for your reply! I hope I'm posting this correctly. This is my first reply on this board.

He did have a spinal tap and that should high protein in the spinal fluid. He had blood tests to eliminate the possibility of MS, lyme disease, vitamin B12 deficiency, and other conditions and diseases that I don't recall right now. He had a recent bloodt est that showed high B6, high protein and no antibodies - leaving us to conclude that this isn't an autoimmune condition. He has had an MRI and perhaps a CT scan - no compression, no tumors, etc.

He had a biopsy for some reason, I can't remember but I was looking at th results the lther day and it showed neuropathy on the lower leg but not the upper. He never had a complete test to check for demylelinating because it was so painful. That's the one where they ***** you, isn't it? He just couldn't bear it and the doctor didn't think it was necessary. But from what I've read, I wondered whether or not it could be demyelinating if his blood test showed no antibodies. Or does that not matter?

His first doctor thought it was Guillain - Barre and he went through some IvIg treatments. Whent hat didn't work, the doctor said he had misdiagnosed him and sent us to NYC to Columbia-Presybytarian (sp?). He was the one that diagnosed Chronic Peripheral Sensory Neuropathy; he thought it might have been caused by a virus or bacteria. But if he tested negatives for antibodies, wouldn't that mean that it wasn't caused by a virus or bacteria? (I just don't know enough to be sure.)

He prescribed IvIG also but the insurance co wouldn't pay for it, saying it wasn't the usual treatment for CPN!! We fought it for awhile but didn't win. (The insurance co would pay 90% of the treatment but that would still leave us with a $2400 a month payment for 6 months. That wasn't a possibility.)

He then went to a neurologist who is supposed to be the best in Syracuse. He is the one who did the blood test for antibodies which no one else had done. He said if the condition was autoimmune, then IvIG was the treatment. If not, then all my husband could do was manage the pain.

Well, we haven't been satisfied with anyone's diagnosis so far since no one can tell him why he has it in the first place! I mean, is this the way it works sometimes, that you just wake up one morning and you find you have Chronic Sensory Neuropathy? If so, then we just have to resign ourselves to it and make the best of it. But if there are other doctors out there can help, then we want to make the rounds before giving in.

Sorry to go on and on. This is so frustrating. What is an MDA clinic - Muscualr Dystrophy? Thanks for your help. Cathy
[QUOTE=6foot3;2754849]cathypem.......You said every test imaginable so i take it all Blood Tests as well as MRI on spine for compression on nerves and also to see for MS lesions.Has he also had EMG and NCV tests to check for Axonal or Demyelinating?? Lastly what about a Lumbar Puncture (spinal tap) to check for about 10 different perameters in the fluid.

If all these have been done.... perhaps taking him to a MDA clinic as they have specialists who deal with these type things than a neurologist who has to deal with all neurological diseases that don't even apply to your husbands case. Again did your husband have a Lumbar Puncture and these other tests done...

Take Care....[/QUOTE]

Thanks for your reply! I hope I'm posting this correctly. This is my first reply on this board.

He did have a spinal tap and that should high protein in the spinal fluid. He had blood tests to eliminate the possibility of MS, lyme disease, vitamin B12 deficiency, and other conditions and diseases that I don't recall right now. He had a recent bloodt est that showed high B6, high protein and no antibodies - leaving us to conclude that this isn't an autoimmune condition. He has had an MRI and perhaps a CT scan - no compression, no tumors, etc.

He had a biopsy for some reason, I can't remember but I was looking at th results the lther day and it showed neuropathy on the lower leg but not the upper. He never had a complete test to check for demylelinating because it was so painful. That's the one where they ***** you, isn't it? He just couldn't bear it and the doctor didn't think it was necessary. But from what I've read, I wondered whether or not it could be demyelinating if his blood test showed no antibodies. Or does that not matter?

His first doctor thought it was Guillain - Barre and he went through some IvIg treatments. Whent hat didn't work, the doctor said he had misdiagnosed him and sent us to NYC to Columbia-Presybytarian (sp?). He was the one that diagnosed Chronic Peripheral Sensory Neuropathy; he thought it might have been caused by a virus or bacteria. But if he tested negatives for antibodies, wouldn't that mean that it wasn't caused by a virus or bacteria? (I just don't know enough to be sure.)

He prescribed IvIG also but the insurance co wouldn't pay for it, saying it wasn't the usual treatment for CPN!! We fought it for awhile but didn't win. (The insurance co would pay 90% of the treatment but that would still leave us with a $2400 a month payment for 6 months. That wasn't a possibility.)

He then went to a neurologist who is supposed to be the best in Syracuse. He is the one who did the blood test for antibodies which no one else had done. He said if the condition was autoimmune, then IvIG was the treatment. If not, then all my husband could do was manage the pain.

Well, we haven't been satisfied with anyone's diagnosis so far since no one can tell him why he has it in the first place! I mean, is this the way it works sometimes, that you just wake up one morning and you find you have Chronic Sensory Neuropathy? If so, then we just have to resign ourselves to it and make the best of it. But if there are other doctors out there can help, then we want to make the rounds before giving in.

Sorry to go on and on. This is so frustrating. What is an MDA clinic - Muscular Dystrophy? Thanks for your help. Cathy





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