It seems like every Dr. I go to just goes down the path he specializes in, I can understand that to a point, but at least he could recommend us checking different avenues. Example......my neuro never suggested a Thyroid Specialist, or any other possibility of another avenue other than Neurological, I have to keep proding him for more ideas. I feel like a part time Dr. and patient without the paycheck. It would be nice if he would come up with a few ideas instead of me having to suggest to him. He told me to get off the internet and live my life. Very easy to say, a little harder to do, when one is experiencing "mystery symptoms"..........wonder if he could.

I share your frustration. I have had to ask my neuro to test for celiac, it never occurred to her. I saw the tests and she ordered half of them. I went to a GI and got the right tests. I guess I should ask my primary care about thyroid and glucose testing to see if I have thyroid problems or pre-diabetic problems. I aldo have a couple docs at Johns Hopkins who seem to think that when they can't figure out what's going on they just send me back to my primary doc and drop me instead of referring me to a peripheral nerve specialist.

it all comes down to one thing,, YOU have to be your own advocate,, if not,,SIGH,,

Yep that it

Suggesting other avenues is generally (though not exclusively) the purview of the PCP, which brings to mind that oldie but aptie...

What's the difference between a general practioner and a specialist?

A GP treats what you've got. A specialist thinks you've got what s/he treats.

And another popular contrast of GP's and specialists:

A general practioner knows almost nothing about a whole lot...

A specialist knows knows a whole lot about almost nothing...

Ta-dum

This is what I LOVE about my rheumatologist. I am so thankful that my muscle biopsy, done by a neuromuscular specialist who "fired" me after the biopsy, showed autoimmune changes resulting in my referral to a rheumatologist. As she explained on my last visit, her job is to go out to all the specialists, gather their knowledge, and synthesize it along with hers into something that is meaningful to my situation so that she can figure out how I need to be treated.

Athena

I'm curious to know what your biopsy showed, if you care to share.

Here's an excerpt with the highlights: "The combination of perivascular mononuclear inflammation of small caliber vessels in the endomysium, with concurrent active neurogenic atrophy suggests a probable vasculitic process affecting both nerve and muscle. The most common clinical presentation of this pathological entity is painful asymmetric axonal polyneuropathy or moneuritis multiplex, neither of which is reported clinically. The findings do not support a metabolic myopathy or a glycogen storage disorder. These findings could also represent a low-grade autoimmune disorder or vasculitis associated with a paraneoplastic syndrome." Also, "there is nonselective fiber atrophy. Immunohistochemical studies for CD3, CD8 and CD163 highlight T-cell rich perivascular infiltrates in the endomysial vessels, as well as surrounding myophagocytic cells and perivascular histiocytes."

No antibodies for connective tissue diseases or paraneoplastic antibodies are showing up in my serum. I had a chest CT today to look for masses. If that's negative I see a neurologist to repeat the EMG and NCV and will have another muscle biopsy since my disease has progressed since the first biopsy in the spring with pain, tingling, and burning now in addition to the weakness.

Athena

Ah! you have a keeper!.. a physician, not just a MD.....