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Old 01-19-2007, 07:16 PM   #1
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Question Looking for a good doc

HI all - this is my first post and it's on behalf of my husband who was diagnosed with sensory peripheral neuropathy. He's seen 5 doctors so far but can't get anyone to diagnose the cause. I know that this is often the case but he's had every test imaginable and a number of things stand out. He has high levels of Vitamin B6, although he isn't taking any supplements! It is not caused by an autoimmune condition. And he had high levels of protein in his blood but they didn't test for a specific protein.

Does anyone know a good doctor in the Syracuse, NY area? And/or, can anyone give advice on an alternative doctor - someone other than a neurologist who might look at all the factors and diagnose him?

This condition occured overnight - with no known cause. He is healthy in every other way. His neuropathy started in his toes and progressed to his lower lip. Thanks in advance for any and all help. I really appreciate it! Cathy

 
Old 01-21-2007, 07:40 AM   #2
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Re: Looking for a good doc

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....
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Old 01-21-2007, 02:31 PM   #3
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Re: Looking for a good doc

Quote:
Originally Posted by 6foot3 View Post
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....
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

 
Old 01-21-2007, 02:33 PM   #4
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Re: Looking for a good doc

Quote:
Originally Posted by 6foot3 View Post
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....
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

 
Old 01-21-2007, 04:26 PM   #5
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Re: Looking for a good doc

Quote:
Originally Posted by cathypem View Post

He did have a spinal tap and that should high protein in the spinal fluid.
Did you mean ''Showed'' high protein in spinal fluid? If so then his doctors should have tested him for ''Demyelinating'' of the nerves by administering an EMG and NCV tests.The high protein count along with his symptoms are a giveaway of ''CIDP'' or Chronic Inflammatory Demyelinating PolyNeuropathy which is autoimmune.
Its simular to Guillen Barre as your first doctor eluded too and properly administered IVIG however this only works for some and not most and is not a cure. It suppresses the immune cells (killer T-Cells) from attacking the Myelin Sheaths which coats the nerves.

Find a neurologist that deals with CIDP or go to a MDA clinic (muscular dystrophy) as they deal with over 30 neurological diseases including ALS and others.
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Old 01-21-2007, 05:40 PM   #6
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Re: Looking for a good doc

Yes, "showed" - sorry, I didn't proof read my post. Yes, it showed high protein in the spinal fluid and a recent blood test showed high protein as well but didn't measure the specific protein. I'm wondering if the high protein indicates MGUS? I thought it might be worth it for him to go back to the original doctor to have the specific protein tested.

About CDIP, which I also thought at one point that he might have, if he tested negative for antibodies, doesn't that mean he doesn't have an autoimmune condition? Thanks for all your help. Cathy

 
Old 01-21-2007, 06:46 PM   #7
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Re: Looking for a good doc

Hi cathy.....CIDP is caused by the T-cells (white blood cells) are eating the myelin. Antibodies have little or nothing to do with disease as they usually show up in Viral infections. So why are the T-cells attacking the body....well there's is something causing inflammation in the body and thats signaling these cells to attack.Thats why the ''protein count'' is high in the spinal fluid as this is an Inflammatory Marker in the nervous system. I have no idea what the high protein in the blood is you keep mentioning but i'd ask your DR. when you see him/her again. Your neurologist can confirm this with an EMG on his nerves that its CIDP. So research this disease cathy and demand that your neurologist test him properly (EMG/NCV) tests...

Please ask if there's anything thing else you like to know about this. Take Care ..
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Old 01-22-2007, 06:42 AM   #8
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Re: Looking for a good doc

Thank you so much for all your help. I'll let you know what happens. Cathy

 
Old 01-22-2007, 05:40 PM   #9
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Re: Looking for a good doc

I'm not sure, but just thought I'd throw it out there just in case.. but an Infections Disease doc might be able to be helpful to help rule out other factors by looking at the labs that have been done and such, might be good to have another perspective and another doc to work with the neuro on this to help come to some conclusion, but hopefully the answer is already at hand. Good luck and many blessings.

 
Old 01-23-2007, 12:26 PM   #10
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Re: Looking for a good doc

I also have sensory neuropathy of unknown cause and high level of B6..I had high levels of protein in one blood test but then normal. I habe a lot of pain and am also very frustrated at a lack of diagnosis. Mine is limited to my legs and feet however. I wish you the best of luck.Love, Sharonn

 
Old 01-23-2007, 01:47 PM   #11
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Re: Looking for a good doc

Have you found any link between the neuropathy and the B6? High levels of B6 can cause peripheral neuropathy but I haven't been able to find a reason for the high levels! B vitamins are water soluable so there really shouldn't be a way for them to build up. Let me know if you find anything and I'll do the same! Thanks! Cathy

 
Old 01-24-2007, 10:01 AM   #12
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Re: Looking for a good doc

Cathy...from what I have researched...B6 can build up and cause toxic levels,hence, neuropathy.But I have taken B-Complex 50's for years. Why now. My own personal thoughts on this are that it is a viral trigger....Does your husband have shingles or cold sores..I read that one of the Herpes virus is responsible for all sorts of havoc. Mine came on suddenly last May. I had a colonoscopy and the anesthesia gave me a very bad withdrawal reaction with all over body pain...it took a long time to go away and I am overdue for one(cancer survivor) Hopefully this will dissappear the way it came. I have a history of spinal surgery so mine can be somewhat attributed to nerves that are compressed IMHO...best of luck...we will keep on hunting for the answer...Love, Sharon

 
Old 01-29-2007, 07:01 AM   #13
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Re: Looking for a good doc

First off, I can understand your frustrations about diagnosis...I believe there are very few here who don't have a really good 'story' to tell about how many docs or years or tests it took to get any diagnosis or treatment! There are soo many different kinds/types of neuropathies and causes, that well if you read thru diagnostic sites, your brain gets sor of 'furry' after #5 and there are over 200!

Second opinions, at this point are cheap. VERY cheap, they buy you peace of mind that all tests that should be done...are being done.. they can reinforce your faith/trust in the current doc or give you the momentum to change...they cannot, usually give the WHY answer...only the what's going on now and then, some what to do/try now things. Before you do tho, just be sure to get any and all copies of tests, reports, letters and notes...whatever from whereever [docs offices, hospitals, films, labs...everywhere-everything] and keep them for those consultations. Also take a look at [url]www.LizaJane.org[/url] a site put together by a PN person who has been thru the spinal, immune and all other neuropathy food mill. It's a site that lists more blood tests and other tests that can be done to numb the mind. That doesn't mean that ALL these tests have to be done in YOUR case, just that it's a way for YOU to keep track of what HAS been done... Don't let it all intimidate you. The tests are enuf for me, but, the whole site has been able to help me 'guage' how I''m doing in the test-category.

You aren't far from major centers...Rochester or NYC, really...such a trip and the peace of mind might just be worth all the wear and extra tear?

Let us know how you are doing... Don't lose hope.

BTW I do have CIDP/auto-immune neuropathy and I have been thru the 'process'. I DID find good docs and I AM getting good/great treatment! I admit I am lucky and am always grateful.

 
Old 01-31-2007, 05:52 PM   #14
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Re: Looking for a good doc

Thanks for your advice. I posted an update in a seperate post. Would you mind sharing what type of treatment you received (or are still receiving)? That's our next step and it would be helpful to hear from someone who is going through it. Thanks so much. Cathy

 
Old 02-07-2007, 09:34 AM   #15
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Re: Looking for a good doc

I don't mind at all...I receive IVIG monthly, a healthy dose of it BTW. I felt relief right away from it, but some folks don't get relief as soon if their auto-immune issues are, well, rampant.

For me, and my insurance the three keys that were clues [along with a long-term pneumonia a few months prior]: were the nerve conduction tests...showing a definite 'downhill' trend, the fact the neuropathy was 'progressing' through my body, and the full magilla in terms of blood-work and spinal-analysis... There was just enuf for my doc to 'define' me in a way my insurance company accepted [THANK GOODNESS!] It really should be your docs doing the work to get the IVIG...granted there ARE S/E's, but most people I've met and learned about agree that these s/e's are usually worth the overall benefits. Some folks tho, get allergic reactions...which should/could be prevented by consistent particular brand use and proper pre-treatments. The options are mainly prednisone [not for my other pre-existing conditions tho] and plasmapheresis [a bit more 'invasive'?]

Cathy, 'web' up CIDP and I bet you will find more than you ever thought you would want to know about it! Same with IVIG! Knowing what-all you're dealing with is really half the battle...the rest is work dealing with it!

I truly hope this helps! I guess I am walking testimony? I'm still walking!
SUPER GOOD THOUGHTS!

 
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