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.

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

It is better to leave when he doesn't know how to help. Maybe someone else can.

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.

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 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

I had a skin biopsy, the result was negative.
Thank you.

Thank you for insight. I am also taking Benfotiamine every day.

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.

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.

THis is really so confusing:confused: Doctor said that if its an autoimmune related, its unlikely to be symmetrical.

This is the same neuro who does not believe that Levaquin can cause PN.

I had symmetrical problems with my hypothyroid issues.
Both hands and feet, severely. Much of that resolved with thyroid hormone replacement treatment.

Now I have more left foot issues, esp with swelling, but that seems to be another trigger. I have a huge surgical scar on that instep. Swelling stops on vacation, and comes back at home, but so far it has been dormant upon return. I haven't figured it out yet, but magnesium lotion on that foot keeps the swelling and additional pain down, as well. I think the stairs here aggravate it.

I apply magnesium potion in my insteps at bedtime after soaking it in warm water with Epsom salt. I think it helps with the feeling ot "tightness" in that area.

While I have respects for my last neuro, I'm confused with what he said about PN caused by autoimmune that its unlikely to be symmetrical. Maybe I will get more answers as I go along.....

This is what I have personal experience with concerning doctors.

There are those who memorize to get thru school, and rely on memory to work.

Then there are those doctors who learn biological processes in the body and how they progress and lead to other things. Along with the memorization of anatomy etc, these doctors are more understanding of how the body really works.

Autoimmune issues typically are global. The antibodies circulate everywhere and attack tissues that have some code in the peptides that the antibodies recognize. So both sides of the body are typically at risk equally. Only if one side has some circulatory problem that prevents blood from getting there equally to the other, would it be one sided. Metabolic issues are the same. We don't see diabetics who get only one foot affected by neuropathy, as both sides usually are affected. They may not be equal perfectly because of some reduced blood flow perhaps.
My hypothyroidism affected both hands and feet equally. I was in my early 30's then. So my circulation was pretty normal.

Compressive issues in the spine, may however only affect one side. Previous trauma to a leg or arm, may predispose to one side. However, drug induced PN or toxins/poisons would be going all over the body too, and be more global.

You could ask that doctor to explain why autoimmune would not affect both sides... that may reveal something. He might be unable to answer that question, even.

Hello Mrs
 

Hi MrsD, there has been alot of talk about auto immune problems. I have another one, and so far I am not finding out alot about it. It seems I go from one to another. found out on tuesday of this week, after an upper GI. It is called eosinophilic esophagitis. Do you know if there is any treatment for this.? I just can't stay healthy. I go in for results of biopsy next tuesday, and for dicussion. I am pretty worried. ginnie

Thank you Mrs.D. You explained it very clearly. I hope doctors have the time to explain issues like this to patient from a layman's point of view.

Hi Ginnie,
What is/are your symptom/s for eosinophilic esophagitis?

I am having real GI problems. I had an abdomen cat scan and nothing shows. The GI doctor is not keen on giving me an endoscopy as I just had a bronchoscopy last month. I am on Nexium but I am having terrible heartburns. Aside from Nexium, I take Ranitidine. Last night, I was awakened by the pain and I could not go back to sleep. I am really concerned because I am on (strong) antibiotics for the next 12-18 months. So, I am really trying to control my GI upset.

I smiled when you said "I just cant stay healthy". So am I. Its like one after the other, and the sad part is, all of them stays....

Thank you.

I failed to ask you, when you said "after upper GI", did you mean an endoscopy or fluoroscopy upper GI?

I am supposed to have a fluoroscopy upper GI using barium, but I am thinking about it because I read in one of the online discussions, that barium is actually used in the lab to grow the Mycobacterium Avium. I wonder reliable is this information....