[onebeed]

I had an appointment yesterday with what was supposedly a "Peripheral Neuropathy Clinic" at a large teaching hospital. The doctor I saw said I could not have peripheral neuropathy because I felt the pin prick and I was not numb. She said the test from the Therapath lab report that stated I had Small Fiber Neuropathy was suspect because she did not know that lab and only trusts the biopsies done by their own in-house hospital lab. I asked her if I could have her skin biopsy done then and she said no, because I do not have peripheral neuropathy. How does one go about finding a good neurologist? I asked her what was causing the excruciating pain, then, and she said she didn't know but it definitely was not peripheral neuropathy.

[Healthgirl]

Wow. Can you get an appointment with someone else?

[Patrick Winter]

Originally Posted by onebeed

I had an appointment yesterday with what was supposedly a "Peripheral Neuropathy Clinic" at a large teaching hospital. The doctor I saw said I could not have peripheral neuropathy because I felt the pin prick and I was not numb. She said the test from the Therapath lab report that stated I had Small Fiber Neuropathy was suspect because she did not know that lab and only trusts the biopsies done by their own in-house hospital lab. I asked her if I could have her skin biopsy done then and she said no, because I do not have peripheral neuropathy. How does one go about finding a good neurologist? I asked her what was causing the excruciating pain, then, and she said she didn't know but it definitely was not peripheral neuropathy.

The Therapath test is good enough. It is the standard used by most neurologists. they basically invented the test. i have small fiber and can feel a pin prick.. Sounds like she doesnt understand what small fiber neuropathy is. Peripheral neuropathy exists/manifests in many forms. Sorry, She's an idiot find someone else.

[onebeed]

I supposed I should stick with my original neurologist. I was trying to find a better one, though, which is why I thought the "Peripheral Neuropathy Clinic" would be able to offer me some better ideas. I have no idea how to find a "good" neurologist. I was trying to find a better neurologist because the original doctor I saw never told me about Lyme disease and left me on my own to figure that out. He just tested me for diabetes and called it idiopathic. But at least he did say I had small fiber neuropathy which is way better than the teaching hospital. I am getting a bit frustrated with doctors at this point.

[DavidHC]

Most physicians are unsympathetic idiots, lacking a basic capacity to think in any real sense and to empathize with their patients. Yet we celebrate them, treat them like gods and pay them very generously. It's complicated why this is so and not worth getting into here, but please don't be discouraged. I had to go through two complete morons, the first of whom was convinced that I was just stressed out or had some soft tissue injury and needed physical therapy because I had a negative nerve conduction study, apparently oblivious tot he fact that SFN doesn't register on such a study and one needs to do a skin biopsy. The second time he saw me, he repeated the same crap, so I let him have it in an informed way and then walked out of his office. You should have seen his face. The second neuro was just shockingly stupid and young, not that age has anything to do with it, but she just didn't know anything. She spent our second session poking me with a needle and wait for it...concluding nothing. So all she could offer me were poles with a safety pin. Thankfully, she did ask for another nerve conduction study, yes a third one, and the neuro who did the test instead of her knew his head from his butt, and said the correct test is a skin biopsy and that I was being treated all wrong. So, for me, it was accidental that I happened on him, a young and brilliant neuro who is a professor at a leading university. So don't give up, please. We all deserve competent and compassionate care, and physicians are a sorry lot, but there are some good ones among them. I was planning on getting a referral to a third neuro from my GP before I met him. Now my GP will send future patients to him. I would have kept looking, even in another city, until I found a good one.

I wish you the best in finding a good neuro. There are people on this site who can help with some idea perhaps, and research online might be useful too. Of course, the best and sometimes only way to know is to pay them a visit. I know, it's not ideal and we shouldn't both deal with an illness and try to find someone who's not an idiot, but that's the reality of the medical profession.

Best of luck!

Originally Posted by onebeed

I supposed I should stick with my original neurologist. I was trying to find a better one, though, which is why I thought the "Peripheral Neuropathy Clinic" would be able to offer me some better ideas. I have no idea how to find a "good" neurologist. I was trying to find a better neurologist because the original doctor I saw never told me about Lyme disease and left me on my own to figure that out. He just tested me for diabetes and called it idiopathic. But at least he did say I had small fiber neuropathy which is way better than the teaching hospital. I am getting a bit frustrated with doctors at this point.

[pinkynose]

Originally Posted by onebeed

I supposed I should stick with my original neurologist. I was trying to find a better one, though, which is why I thought the "Peripheral Neuropathy Clinic" would be able to offer me some better ideas. I have no idea how to find a "good" neurologist.

for that rare neurologist who is knowledgeable, open minded, keeps current and is willing to work with you to try to find a cause. I'm still looking. I now have a team of people and no neurologist which can be confusing with the overlaps. I would rather one doctor but so far it hasn't happened. They say it takes a village.....

My original neurologist, who came highly recommended, only did the basic tests and was not willing to look any further. He did refer me to an alleged top neurologist, who had trained the majority of "best" neurologists in my large city. After waiting months for that appointment Mr neurology told me (after a physical exam and only looking at my nerve conduction test) that my entire problem was caused by crossing my legs. If I stopped doing that I'd be fine. My point is I have found many doctors to be egotistical robots and/or idiots and you can't take it personally. I do believe there are some good ones out there but it takes work and a bit of luck to find them.

[Patrick Winter]

Originally Posted by pinkynose

for that rare neurologist who is knowledgeable, open minded, keeps current and is willing to work with you to try to find a cause. I'm still looking. I now have a team of people and no neurologist which can be confusing with the overlaps. I would rather one doctor but so far it hasn't happened. They say it takes a village.....

My original neurologist, who came highly recommended, only did the basic tests and was not willing to look any further. He did refer me to an alleged top neurologist, who had trained the majority of "best" neurologists in my large city. After waiting months for that appointment Mr neurology told me (after a physical exam and only looking at my nerve conduction test) that my entire problem was caused by crossing my legs. If I stopped doing that I'd be fine. My point is I have found many doctors to be egotistical robots and/or idiots and you can't take it personally. I do believe there are some good ones out there but it takes work and a bit of luck to find them.

Ya know what they LOVE???? Writing scripts for Gabapentin and Lyrica and telling you to come back in 6 months!

[onebeed]

Originally Posted by Patrick Winter

Ya know what they LOVE???? Writing scripts for Gabapentin and Lyrica and telling you to come back in 6 months!

HA! This is too true.

[Healthgirl]

Originally Posted by Patrick Winter

Ya know what they LOVE???? Writing scripts for Gabapentin and Lyrica and telling you to come back in 6 months!

That is it in a nutshell. I have been to 5 of them. I remained with one and I am down to pain management and 6 month visits. He is very nice and not an egomaniac. He clearly says they just can't figure out why this is happening to healthy young people and that it is suspected to be some kind of an autoimmune process.

I have polyneuropathy through out my entire body and head and it is a complete mystery. I have given up on conventional doctors finding the answer. I have the diagnosis and lab work that tells me that my nervous system is damaged, but nothing else. It is extremely frustrating. I'm not losing hope though.

[Equine Dentist]

Originally Posted by Patrick Winter

Ya know what they LOVE???? Writing scripts for Gabapentin and Lyrica and telling you to come back in 6 months!

They do love that! You just cracked me up. I needed that.