Please, help me all you wise members.
I am frustrated, and feel I have come to the end of "round one", if you ubderstand what I mean.
I have had so many tests and labs. and seen so many specialists.
I have gotten "objective" proof of polyneuropathy and autonomic neuropathy.
By "objective" as well as vasculitis. I mean , the doctors like to use the opposite of that word, namely" subjective" when they write regarding my symptoms, which off course are subjective, because we all know that the neuropathy both hurts and debilitate us, and we can only describe that by way of telling verbally to the doctor regarding our experiences.
My dilemma is:
I have 2 neurologists, one local that looks after the neurovascular part, as well as also acting as my local general neurologist. The other neuro is a professor with the university that I was referred to regarding my neuropathy. ( and it was pretty late in the game) He diagnosed both polyneuropath, long nerves included, sensory and motor. He also diagnosed re. small fiber neuropathy. I later had theese diagnosis confirmed by the Majo Clinic.
I have a Rheumothologist, that diagnosed the vasculitis, and is treating that, and she actually has ended up treating my neuropathy also. She says the terrible neuropathy nust be due to some autoimmune disease, but she can not find what.
So I am on high doses of Lyrica, and on Amitriptyline just to treat the symptoms. The Mayo Clinic did not do any thing for me. I drove 6 hour each way, and spent 3 nights in hotel, then came back in on week again just to see a rheumotologist, that was not available for me the first trip. (They should have had me see one) So the end of this story was that they just said" agree with present treatment, and continue with same" The neuro at Mayo just said: " at this time, we can only call it Ideopatic Neuropathy" so " we should treat the symptoms"
I have a primary Care physician that I have seen verry regularly. He has basically agreed with me in choosing specialists, and I have " an open acses insurance policy;
But I have a feeling this PCP really does not care one way or another. He just says: well I can not help you with that or, " Well. you have been tested more than any patient I know," or " you are seeing all theese specialists"

I had extensive testing done also with GI. There was a special GI, ( I had to travel some, he was outside my district) and he was knowlegable regarding auto immune disease ang Gastroenterology broblems. He diagnosed me with gastrophoresis, that again is a second test now to " proove" subjectivly that "I have something" Sounds imbarasing to write all this, but it is true

So now the real problem: WHO IS RESPONSIBLE TO FALLOW UP AND KEEP TESTING TO FIND THE END DIAGNOSIS ?
I think probably the answer would be THAT WOULD BE ME, THE PATIENT

I have kept trying and I have kept forcing and reading up on all I have asked for tests, I have gone from doctor to doctor, being insulted some times with the things they say. I have left some doctors and gone to others.

Now there is not any one in charge I just know that I have 3 important tests coming up They are admission to hospital for 3 days for videomonitored EEG and sleep study. Then I have a Spinal Tap, Then I go down to that specialty neuro to have another EMG and NCS done on left arm, because I find there is changes.
But I know that thees specialists, they only want to see you and diagnose you or do a spsefic test, not so that they want to sign up for ongoing investigation.
So my PCP doen in no way seem interested, it has been so that I only inform him re other test and outcome etc.
No one says: "HMMM let us see, what do we do next?
None of the doctors have done that, so I FEEL THAT I HAVE NO DOCTOR IN CHARGE .