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Old 10-28-2017, 06:01 PM
woodfrogs woodfrogs is offline
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Join Date: Oct 2017
Posts: 4
5 yr Member
woodfrogs woodfrogs is offline
New Member
 
Join Date: Oct 2017
Posts: 4
5 yr Member
Default Peripheral neuropathy and doctor issue

I have a question about how to deal with a neurologist. I am hoping someone can advise. I have seen him 3 times in total.

I have confirmed Celiac disease (since 2002). Over the past year and a half, I had increasingly worsening peripheral neuropathy. During this time, there were several instances of unintentionally ingesting gluten while eating out during work and professional events. Three months ago, again after accidentally consuming food with gluten, a part of both my feet became totally numb and peripheral neuropathy worsened. I have since stopped eating out and am on a low-carb, high fat diet, with significant symptomatic improvement since then. Now only a small part of my big toes are partially numb and peripheral neuropathy is currently mild.

I am also having simultaneous symptoms with GI (my ileum is eroded with increased IELs, characteristic of either healing or mild untreated celiac disease).

Last year when I went to this neurologist, he was certain that I had MS despite MRIs looking normal. He started discussing MS medication. I respectfully disagreed with his diagnosis due to lack of objective evidence and asked that he please delay his official diagnosis. I said I would go out of state for a second opinion. Second opinion (MS specialist) confirmed I do not have MS and wanted to run more tests, suspecting that the symptoms were either vascular or related to celiac. I am going out of state again for follow-up soon (nerve conduction tests and biopsies) but was told to go to my in-state neurologist for basic eval of current symptoms first.

This time his attitude was totally different. He questioned why I came back to him, if the out of state doctors were better. I requested my medical report from my visit with him afterwards, and found a lot of incorrect information in it, and also the following, which seems somewhat concerning to me (I had to look up several of these terms):

The report stated:
I had complained of neurological symptoms for the last 6 years
Have astasia-abasia (I don't have problems walking, so this doesn't make sense to me)
Have one-sided “giveway weakness”
Several statements that it had always been his opinion last year that my symptoms were never neurological in origin.
That I had not had a VEP test to confirm optic neuritis (I did, out of state, and it was positive/abnormal)

He also forwarded his report to all of my doctors. I very am concerned that his report might compromise my future medical care and diagnosis, and I am not sure what is the best way to deal with this. (Clearly, I do not plan to go back to him).

Thanks.
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"Thanks for this!" says:
ElaineD (01-11-2018)