Neuro Appt

[SGWhiskers]

Ihad my firwst neuro appt today. My chief complaints are nerves that tingle, fasiculations throughout my whole body, aches and pains, cognitive changes, and intermittent eye pain. The doc recognized that celiac can cause problems neurologically. I also had a classic migraine today to confuse things. He listened, but I doubt perfectly, because I told him I was infertile and then 30 seconds later he moved on to my marital status and asked if I had kids. In the end, he said I had loss of sensation in my nerves, celiac and migraine. Yup. I knew that. He is sending me on to have an EEG or is it an EMG and to a neuromuscular specialist for a possible biopsy. He said he wasn't concerned about my cognitive changes because I seemed "pretty bright" which is still true, but I'm not my old self by a long shot.

I've got plans to see another neurologist at a different hospital, but I wanted your reviews of if this doc sounds as good as I'll get, or is just blowing me off. I can't afford to waste more years of my life trying to convince doctors I really am sick. Too many years of missdiagnosis.

Thanks for your opinions.

[mushroom]

  SGWhiskers said:

Ihad my firwst neuro appt today. My chief complaints are nerves that tingle, fasiculations throughout my whole body, aches and pains, cognitive changes, and intermittent eye pain. The doc recognized that celiac can cause problems neurologically. I also had a classic migraine today to confuse things. He listened, but I doubt perfectly, because I told him I was infertile and then 30 seconds later he moved on to my marital status and asked if I had kids. In the end, he said I had loss of sensation in my nerves, celiac and migraine. Yup. I knew that. He is sending me on to have an EEG or is it an EMG and to a neuromuscular specialist for a possible biopsy. He said he wasn't concerned about my cognitive changes because I seemed "pretty bright" which is still true, but I'm not my old self by a long shot.

I've got plans to see another neurologist at a different hospital, but I wanted your reviews of if this doc sounds as good as I'll get, or is just blowing me off. I can't afford to waste more years of my life trying to convince doctors I really am sick. Too many years of missdiagnosis.

Thanks for your opinions.

I have found it is really hard to judge a new doc (in most cases--others just jump out as really bad) on a first visit. Any time they do not just blow you off has to be considered a positive But a second opinion as a basis of comparison can't hurt if you can afford it You can then compare if they are both coming from a standard neurological position or if one puts more thought into it than the other and is willing to consider alternative diagnoses and possiblities, testing recommendations, etc. If they both seem much the same then you quite probably are not going to do much better without going through the entire neurology directory. Just my thoughts.

[ang1e0251]

What were you expecting to hear from this doc? Did you have a guess at what kind of diagnosis he might offer? Are the tests he's ordering along the lines you expected? I thought you were one step ahead when he said celiac disease could attribute to some of your symptoms. Most don't know that much.

What about vitamin testing? Did he say anything about dificiencies being a possibility? It's hard to get one stop shopping with all the different organs and systems that can be affected by celiac disease.

[Amy Joe]

An EMG is a very good place to start with. It will help determine any small or large fiber/nerve damage. I have had many years and many NL's. To have one at the first appointment order an EMG is a good sign that he IS listening to you.

I had 1 done last summer. Not for Celiac but for Chiari Malformation and Autonomic disorders of the Sympathetic Nervous System. Mine came back with small fiber neuropathy, POTS.

Neurology is a very difficult part of medicine and takes a lot of testing. It is hard to believe that NL is about 20 years behind other medical fields such as cardiology or breast cancer.

I would make sure your B12 and D levels are in the normal range and depending on where you live a Lyme's test.

Amy Joe

[SGWhiskers]

Thank you for your opinions about this neuro. I agree, it is hard to judge a doc after a first appt, so your insights are especially valuable. I'll be seeing the other neurologist because of a change in my insurance, but have the option to see this one again for a higher copay. So, now I have an idea that he is at least typical and possibly good and now I'll wait the many months for the next neuro appt.