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Old 09-21-2012, 06:52 PM #1
Idiopathic PN Idiopathic PN is offline
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Default Neurologist's Visit

I had my NCV today. Supposedly, I am also scheduled for an EMG (my first NCV/EMG was done 6 months ago), but after the neuro saw how normal my NCV was, he decided to forego the EMG. My NCV result was "robust", accdg to the neuro.

He explained to me, in a nice way, that he could no longer give me further tests because as far as the nervous system is concern, he could not see anything wrong with me. We already did almost everything but all are negative. So, the decision was for me to focus on my other health issues.

My fear of being blown away by my doctor happened today. But the strange thing is, I did not feel as bad as I expected it to be. I know this was coming.
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Old 09-21-2012, 06:59 PM #2
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Default Hi Idiopathic Pn

Sorry that happened to you. I had a neurologist who blew me off too, didn''t believe me at all that I still had pain. fused C3-7 now after re-doing what he blew. Sometimes I just think doctors when they can't find what is wrong, thow up their hands and give up. the more gentle thing to do, would be to refer you on to another specialist. It is not in your head. I feel bad when this happens to people. I hope that you can have resolution someday soon. ginnie
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Old 09-21-2012, 07:50 PM #3
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It is better to leave when he doesn't know how to help. Maybe someone else can.
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Old 09-21-2012, 08:46 PM #4
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I really wouldn't consider this as being 'blown off'. After all, he has done a very thorough work up hasn't he? I only think of doctor as blowing off patients when the discontinue testing prematurely, I don't think that is the case here. He may just not have any other ideas and needs to step aside at this point.

I don't think you should just give up. But I think you should focus on symptom relief...trying different treatments and supplements until you find the right combination that works for you. It never hurts to consult with other doctors for fresh ideas, so I would continue to explore an occasional neurologist. Just try to understand that they are limited also, so don't have overly high expectations.

I waited many years to find out what was behind my problems...and still waiting for a few answers now. Trying to focus on issues you can treat and improving your quality of life in regards to pain, etc would be best. You know this isn't in your head and I feel certain it will present itself when the time is right...then everything will make sense.
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Old 09-22-2012, 12:14 AM #5
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Has he checked for damage to the small fibre nerves ? I went through the same deal with my first neuro, his neuropathy knowledge was very little.
He only done a NCV and told me me he couldn't find anything wrong with my nerves.
The next [proper] neuro done thermal testing and found small fibre damage, the best test is a skin punch biopsy but we haven't got it here in OZ.

best of luck to you.

Last edited by Brian; 09-22-2012 at 12:58 AM.
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Old 09-22-2012, 01:27 AM #6
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I agree with whoever said try to fix symptom relief.

3 doctors and 2 diagnosis after a doctor, it was my own research here and other places that has led to most of my symptom relief. Benfotiamine has been a miracle for me, completely stops the burning, so long as I take enough of it. I have no idea if my problems are from thyroid, or what but I do know my best results are from supplements and my own blood testing when I go on my own accord for blood test. I found a place you can order your own tests, thyroid, diabetes, supplement levels, etc.

I was hurt the first time my doctor "released" me. Felt like I did something wrong.

The second time, I was the one to FIRE the doctor.

Third doctor is working much better, now that I realize he works for me and when he stops working for me, I will move on.

Looking back...all those tears and hurt from that first doctor? I should thank him. It made me stronger. Made me realize I am in control of my health.

Don't give up and don't let "no" stop you. Don't let a doctor's ignorance stop you. And yes, I need doctors, but sometimes...they have no common sense. They need to stop relying on tests so much and start listening to symptoms.

good luck
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Old 09-23-2012, 07:27 PM #7
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Quote:
Originally Posted by Brian View Post
Has he checked for damage to the small fibre nerves ? I went through the same deal with my first neuro, his neuropathy knowledge was very little.
He only done a NCV and told me me he couldn't find anything wrong with my nerves.
The next [proper] neuro done thermal testing and found small fibre damage, the best test is a skin punch biopsy but we haven't got it here in OZ.

best of luck to you.
I had a skin biopsy, the result was negative.
Thank you.
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Old 09-23-2012, 07:29 PM #8
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Quote:
Originally Posted by Stacy2012 View Post
I agree with whoever said try to fix symptom relief.

3 doctors and 2 diagnosis after a doctor, it was my own research here and other places that has led to most of my symptom relief. Benfotiamine has been a miracle for me, completely stops the burning, so long as I take enough of it. I have no idea if my problems are from thyroid, or what but I do know my best results are from supplements and my own blood testing when I go on my own accord for blood test. I found a place you can order your own tests, thyroid, diabetes, supplement levels, etc.

I was hurt the first time my doctor "released" me. Felt like I did something wrong.

The second time, I was the one to FIRE the doctor.

Third doctor is working much better, now that I realize he works for me and when he stops working for me, I will move on.

Looking back...all those tears and hurt from that first doctor? I should thank him. It made me stronger. Made me realize I am in control of my health.

Don't give up and don't let "no" stop you. Don't let a doctor's ignorance stop you. And yes, I need doctors, but sometimes...they have no common sense. They need to stop relying on tests so much and start listening to symptoms.

good luck
Thank you for insight. I am also taking Benfotiamine every day.
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Old 09-23-2012, 08:05 PM #9
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Quote:
Originally Posted by en bloc View Post
I really wouldn't consider this as being 'blown off'. After all, he has done a very thorough work up hasn't he? I only think of doctor as blowing off patients when the discontinue testing prematurely, I don't think that is the case here. He may just not have any other ideas and needs to step aside at this point.

I don't think you should just give up. But I think you should focus on symptom relief...trying different treatments and supplements until you find the right combination that works for you. It never hurts to consult with other doctors for fresh ideas, so I would continue to explore an occasional neurologist. Just try to understand that they are limited also, so don't have overly high expectations.

I waited many years to find out what was behind my problems...and still waiting for a few answers now. Trying to focus on issues you can treat and improving your quality of life in regards to pain, etc would be best. You know this isn't in your head and I feel certain it will present itself when the time is right...then everything will make sense.
You are right en bloc, I was not "blown away" as you defined blown away. My neurologist has a good reputation and he was thorough with his physical examinations. He did not give me more labworks, though when he started seeing me. He based his evaluation on the previous tests requested by the other neurologists. But it was this neurologist who did the skin biopsy.

The reason why I was not so affected when he politely suggested that I should focus on my other symptoms is because I know and sadly accepted that he could not help me anymore.

Thank you very much for the encouragement of not to give up and for telling me that its not just in my head. If ou remember, the same neuro told me once that I should consider another approach for treatment - meaning I should see a psychiatrist. I sort of consider the idea that it could be in my head. But, when something showed up in my lungs then I was reinforced that something is happening in my body. I am not sure if the M. Avium has something to do with my neurological pain. I am not even sure what to call this pain in my feet/legs and skin. The neuro told me that there is nothing wrong with my nerves. He said that as far as my nervous system is concerned "I dont see anything wrong with it". I should sort of just accept the pain.

The neuro mentioned about spinal tap. But, he said that if my pain is caused by an autoimmune disease, it is unlikely to be symmetrical. My pain is symmetrical - both feet, legs and arms. WHich part of your body has a PN?

By the way, I am now just on Spiriva (the pulmo discontinued the Symbicort). I am due for a Fluoroscopy Upper GI. My gastro doctro would have wanted an endoscopy but because of my lung problem, she decided to give the Upper GI instead. My body is so busy

Thank you. I sincerely appreciate your reply.
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Old 09-23-2012, 08:21 PM #10
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My PN is symmetrical (both feet & legs--some sensory loss is also in both hands, but very mild).

Actually I think most autoimmune IS symmetrical...it's compression, injury, etc that is more one-sided. I also think diabetic and toxic PN are symmetrical as well. Both MrsD & Glenntaj would know more about this, probably better then I.



Quote:
Originally Posted by Idiopathic PN View Post
You are right en bloc, I was not "blown away" as you defined blown away. My neurologist has a good reputation and he was thorough with his physical examinations. He did not give me more labworks, though when he started seeing me. He based his evaluation on the previous tests requested by the other neurologists. But it was this neurologist who did the skin biopsy.

The reason why I was not so affected when he politely suggested that I should focus on my other symptoms is because I know and sadly accepted that he could not help me anymore.

Thank you very much for the encouragement of not to give up and for telling me that its not just in my head. If ou remember, the same neuro told me once that I should consider another approach for treatment - meaning I should see a psychiatrist. I sort of consider the idea that it could be in my head. But, when something showed up in my lungs then I was reinforced that something is happening in my body. I am not sure if the M. Avium has something to do with my neurological pain. I am not even sure what to call this pain in my feet/legs and skin. The neuro told me that there is nothing wrong with my nerves. He said that as far as my nervous system is concerned "I dont see anything wrong with it". I should sort of just accept the pain.

The neuro mentioned about spinal tap. But, he said that if my pain is caused by an autoimmune disease, it is unlikely to be symmetrical. My pain is symmetrical - both feet, legs and arms. WHich part of your body has a PN?

By the way, I am now just on Spiriva (the pulmo discontinued the Symbicort). I am due for a Fluoroscopy Upper GI. My gastro doctro would have wanted an endoscopy but because of my lung problem, she decided to give the Upper GI instead. My body is so busy

Thank you. I sincerely appreciate your reply.
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