[woodfrogs]

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.

[janieg]

Hi wf,

Sorry to hear of your bad experience with the neuro. Unfortunately, it's all too common.

I experienced doctors disagreeing on things, and they are never hesitant to correct things on records. My neuro diagnosed me at one point with thoracic outlet syndrome, and put in my record. The spinal specialist disagreed, and removed it. When I went back to the neuro, he put it back in. After he retired, his replacement took it back out.

If your neuro is in a network, any other doctor in the network can adjust diagnoses in your electronic records. His comments/notes will remain and future doctors can see them, but I've found many will make their own decisions and not take them to heart.

I should mention that when I saw a gastro at some point after my neuropathy set in, the first thing he did was test me for a "silent" form of Celiac since he said that can cause neuropathy.

janie

[woodfrogs]

Hi janie. Thanks for the response. I get worried when doctors start writing wrong things, especially since I've had family members who went through misdiagnosis nightmares before. In a small town so doctors are very cliquish here and tend not to disagree with each other.

Fortunately the celiac diagnosis is not in question (I had blood work and biopsy to confirm years ago) and I also have atypical celiac. Several doctors, although not the neurologist, pointed to celiac as being potentially the cause of the neuropathy, which I agree with. But I was also told they can't confirm that I even have neuropathy or how to treat it without a test showing objectively (e.g. blood or biopsy) that I have neuropathy, nerve or tissue damage.

I noticed you have small fiber neuropathy diagnosis in your tag. This is something I wanted to ask to be tested for since I have read papers on SFN and Celiac disease. I am supposed to get muscle/nerve biopsies and nerve conduction test out of state, but I think these do not detect issues with small fibers.

Originally Posted by janieg

Hi wf,

Sorry to hear of your bad experience with the neuro. Unfortunately, it's all too common.

I experienced doctors disagreeing on things, and they are never hesitant to correct things on records. My neuro diagnosed me at one point with thoracic outlet syndrome, and put in my record. The spinal specialist disagreed, and removed it. When I went back to the neuro, he put it back in. After he retired, his replacement took it back out.

If your neuro is in a network, any other doctor in the network can adjust diagnoses in your electronic records. His comments/notes will remain and future doctors can see them, but I've found many will make their own decisions and not take them to heart.

I should mention that when I saw a gastro at some point after my neuropathy set in, the first thing he did was test me for a "silent" form of Celiac since he said that can cause neuropathy.

janie

[ElaineD]

There are great doctors, and lots of mediocre and even terrible doctors. I choose my doctors based on their medical schools and the hospitals where they trained, and they are all affiliated with Duke University Medical School. So far I have fared well, here in an area of two great university medical centers within 20 miles, Duke and the University of North Carolina.

It is so stressful to find and visit any doctor, and there is a proven strong tendency to like and admire any doctor we have entrusted with our health.

It takes a huge effort to do as you have done: seek a second opinion and make the emotional and physical effort to take your own care into your own hands.

You are doing the right thing. Each of us is different and you will find your own way, with team work from great doctors.

I HIGHLY recommend seeking all medical help from University Medical Centers, rather than from private practice physicians.

Regards, ElaineD

[echoes long ago]

Under HIPAA you of course can review and make copies of your medical records. You can also make corrections to any errors in your medical records.

How to Correct Medical Record Errors

Originally Posted by woodfrogs

Hi janie. Thanks for the response. I get worried when doctors start writing wrong things, especially since I've had family members who went through misdiagnosis nightmares before. In a small town so doctors are very cliquish here and tend not to disagree with each other.

Fortunately the celiac diagnosis is not in question (I had blood work and biopsy to confirm years ago) and I also have atypical celiac. Several doctors, although not the neurologist, pointed to celiac as being potentially the cause of the neuropathy, which I agree with. But I was also told they can't confirm that I even have neuropathy or how to treat it without a test showing objectively (e.g. blood or biopsy) that I have neuropathy, nerve or tissue damage.

I noticed you have small fiber neuropathy diagnosis in your tag. This is something I wanted to ask to be tested for since I have read papers on SFN and Celiac disease. I am supposed to get muscle/nerve biopsies and nerve conduction test out of state, but I think these do not detect issues with small fibers.

[janieg]

Originally Posted by woodfrogs

I noticed you have small fiber neuropathy diagnosis in your tag. This is something I wanted to ask to be tested for since I have read papers on SFN and Celiac disease. I am supposed to get muscle/nerve biopsies and nerve conduction test out of state, but I think these do not detect issues with small fibers.

I have never had the "punch biopsy" to confirm the SFN diagnosis. My original neuro said, "I know that's what you have, it won't tell us why, and you've been through enough testing." He's retired now, and his partner whom I recently saw didn't mention it.

[pinkynose]

Finding a neurologist that actually listens to what their patients have to say has been a huge frustration. In my opinion, many neurologists and surgeons are extremely egotistical. Your doctor questioning why you came back to him after going to someone else seems like ego to me.

I had one neurologist considered to be the top of his field that told me my symptoms were caused by me crossing my legs. He swore if I stopped crossing my legs my symptoms would go away. The next neurologist read my file and although he wouldn't speak against the doctor (that seems to be a big no-no) he never pursued that diagnosis.

I have found that as long as I behave like a responsible, mature adult, most doctors follow in the same pattern. If they don't move on to the next

[woodfrogs]

I went out of state to get evaluated by a specialist who focussed on nerve problems. He did an EMG of arms and legs which were normal and said afterwards that there was no point in doing any other testing (including SFN biopsy) as he didn't see what it would accomplish. When I brought up that I had celiac disease, he questioned the diagnosis, and when I said it was confirmed in 2002 with biopsy and blood work, and said I had concern as to whether the symptoms were from celiac, he said neurological symptoms in celiac were "controversial" and the conversation ended there. At that point I did not have the energy to disagree with him, and just left when the appointment was done. I am feeling very discouraged right now, especially since visual problems related to optic neuritis are worse which are my primary concern. Every time I go to optic neurologist in my home state, he tells me in 3 months I'll improve, in 3 months I don't, then get another episode and vision gets worse, go back to him, and the same repeats.

[woodfrogs]

Update:

Went to other specialists and ignored the neurologists.

Found out:

Have fat soluble vitamin deficiency, including vitamin A deficiency, despite adequate dietary intake, which apparently was discovered as early as 2016, but no one told me about it (until now).

Got biopsies for SFN from dermatology, waiting on results. GI did genetic tests, so on top of previous positive biopsy and blood test, I also have gene for celiac. Was told I'd be referred to neurologist on east coast who deals with celiac-related neurological sx, if neurological symptoms are determined to be celiac-related.

[ElaineD]

It is a long and exhausting journey to find any help for chronic conditions that cross specialties.

We feel so alone, and doctors can be so arrogant and ignorant, it is criminal.

Again, I stress the importance of Medical Centers. Yes, there will be difficult doctors there, as well. But you have a better chance of finding well educated doctors, and the Medical Centers demand feedback from patients for almost every visit or procedure

I just completed an extensive survey related to recent esophageal treatment I had with anesthesia at a University of North Carolina Medical Center affiliated facility.

The questions included cleanliness and care for my well being. But there was a long section with questions like: Did your doctor tell you what to do if you had nausea and vomiting after your procedure? The the next question: Did you have nausea and vomiting after your procedure.

Trust me, when every single person you deal with KNOWS there will an opportunity for you to give both survey feedback and open-ended comments on your treatment, they will be very careful to treat you well.

I'm sorry you are learning how difficult this is, but it sounds as if you are on your way to treatment and care that will help you.

Regards, ElaineD