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Old 12-16-2015, 07:58 AM #1
onebeed onebeed is offline
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Default 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.
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Old 12-16-2015, 08:15 AM #2
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Wow. Can you get an appointment with someone else?
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Old 12-16-2015, 08:57 AM #3
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Quote:
Originally Posted by onebeed View Post
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.
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Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced)




• R-Lipoic Acid: 100mg - 300mg Daily
• Acetyl-L Carnitine: 1500mg Daily
• Vitamin B12: 1000 mcg Daily
• Magnesium 500mg Daily
• Grape Seed Extract 200mg Daily
• Benfotiamine 300mg daily

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Old 12-16-2015, 09:53 AM #4
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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.
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Old 12-16-2015, 10:40 AM #5
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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!




Quote:
Originally Posted by onebeed View Post
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.

Last edited by DavidHC; 12-16-2015 at 11:23 AM.
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Old 12-16-2015, 11:31 AM #6
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Ooo I can feel my toes

Quote:
Originally Posted by onebeed View Post
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.
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.
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Old 12-16-2015, 01:40 PM #7
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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.
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Old 12-16-2015, 02:41 PM #8
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Default I'd keep looking

Quote:
Originally Posted by onebeed View Post
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.
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Old 12-16-2015, 03:57 PM #9
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Quote:
Originally Posted by pinkynose View Post
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!
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Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced)




• R-Lipoic Acid: 100mg - 300mg Daily
• Acetyl-L Carnitine: 1500mg Daily
• Vitamin B12: 1000 mcg Daily
• Magnesium 500mg Daily
• Grape Seed Extract 200mg Daily
• Benfotiamine 300mg daily

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Old 12-16-2015, 04:48 PM #10
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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.
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