Bad visit with new neurologist
 

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.

Wow. Can you get an appointment with someone else?

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.

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.

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!

I can feel my toes
 

and was DX periferal neuropathy with diabetic origin.I wonder if the Dr. you saw was a neurologist? Many clinics use physicians assistants now but they should not be diagnosing. Good luck, Ken in Texas.

onebeed: I've mentioned this many times here, but a friend who is living with "ideopathic" neuropathy for about 15, 30 yrs of taking statins....is off all drugs and doing so much better on grape seed extract which she is now taking over 5 yrs. I'm taking it 20+ yrs...it's good prevention/protection, a powerful antioxidant and can help so much. Also reduces diabetic issues...my friend says she is not diabetic, but a doc told her borderline and she ignores it.

My original reason for getting on Pycnogenol and then grape seed ex a year later, we were told it MAY prevent cancer(s)....music to my ears 20 yrs ago. Today cancer research hospitals are using these OPC's in cancer research.

I am so aware of sugars/carbs and don't want sugar issues.

Only disclaimer if one takes a pharma blood thinner, then can't take grape seed ex. One or the other.

My good friend, long story, has gone thru an afib issue and now on pharma blood thinner, but she's working to get off/reduce the 6-7 heart drugs she left hospital with. She's adding grape seed extract back into her system. I believe a lot of her issues are that she didn't take magnesium. She's very alternative but slacked on some minerals and now takes 3 heart alternative supplements including more magnesium.

We need to do a lot of research and work for ourselves...I ended up with nerve damage from hip replacement and no more burn/tingle since I've taken a couple supplements I've talked about here. I did not go to nerve docs etc with this damage, I researched and talked to people who deal with this damage too...and still have major numbness, but no burn. Take care.

I'd keep looking
 

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.:rolleyes: 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!

HA! This is too true.

Pinkynose says 'They say it takes a village…' But why do they make the Village Idiot the Neurologist?:D

Dave.

What makes me really angry is that I was pulled into this particular office by their webpage. It stated that they were "One of 15 Centers for Excellence in the country" as designated by the Neuropathy Association. I was so mad after my appointment that I tried to check out the Neuropathy Association and found out that it did not exist. It disbanded in 2008. I should have checked them out before my visit. Live and learn. This is a major university. I thought they would be above board.

This is, of course, why--
 

--if one has the capability and one can afford it, it is often worth a visit to one of the true centers that both has practices in peripheral neuropathy AND has a major reasearch component.

The ones I talk about are:

Cornell-Weill in New York City (which is in partnership with the New York/Columbia Presbyterian system)
Jack Miller in Chicago
Johns Hopkins in Baltimore
Massachusetts General in Boston
Jacksonville Shands in Jacksonville Florida

There are others that advertise but I find it harder to vouch for them, even though they may have some good doctors (i.e., Mayo Clinic, University of California/San Francisco).

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.

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

Hmm. If you rock the diabetes you get to do the above on a quarterly schedule, at least I do...

Another thing that bad neurologist said that just left me with my mouth hanging open is that I could not have Lyme disease because I never had an EM rash (bull's eye rash). Even though I had a positive test. She is bad enough to be dangerous to other patients who don't know any better.

This is true. After a rather bleak several visits to Yale and being untreated for MG, I finally drove to Baltimore and experienced excellent treatment at Johns Hopkins. I now have new hope for my future.

That's wonderful news, DynaGuy! Can you share who you saw at Hopkins? They are only 30 minutes away from me. Had pretty much given up on neurologists.

I saw Dr Drachman in Neurology.

When I was going to Yale I was given 2 options. Prednisone, or Azathioprine.
Prednisone made me crazy. And Azathioprine has some side effects I didn't care for, along with the fact that it could take 8 to 12 months to actually work.

None of the tests given at Yale even proved conclusively that I had MG.

Once the EMG done at Johns Hopkins showed I have MG, the doctor prescribed 4 infusion treatments and Tacrolimus to be taken first, then followed by Celcept.

I'm still waiting for my insurance company to approve the treatment.

My experience at Johns Hopkins was first rate and I feel like I'm finally getting somewhere with this!

Good luck to you!

This happened to me too
 

A neuromuscular "specialist" I just saw said he didn't think I had peripheral neuropathy at all because I "passed" the pin prick test. To hear this after 3 years of PN diagnosis by three neuros coinciding with 3-1/2 years of PN symptoms was surprising to say the least.

It took a year to get in to see this "specialist". I asked what he thought it was if not PN. He laughed and said "Well, I don't know but it was sure nice to meet you today", shook my hand and left the room.

I know how you feel.
 

I am sorry you had to go through that. I posted some time back about my long awaited appointment with the head neurologist for the most prestigious teaching hospital in my city. He told me all my symptoms (including the ones in my arms and hands) came from crossing my legs. He told me if I stopped they'd all go away. I was so disappointed because I had put so much hope into that appointment. :hug:

Pinky, many years ago I read or heard about NOT crossing our legs as it cuts off circulation. I have not crossed my legs for many years. When I do stretches to stretch out my back, I cross my legs over each side to stretch out my back...but sitting, I never do. I'm forever telling one of our bridge players, "uncross" your legs.

I'm very aware of this and even watch people on TV who cross their legs...lots of men do. Now what this has to do with PN??

What do they call the person who graduates last in medical school?

That's right.....DOCTOR. :eek: