hi, again.
to Abby.
I agree, when you go to a highly paid specialist, you expect to get quality health care product for the money being spent, by the patient, and the insurance company. Do yoy know, that when you go to a specialist, for the first initial appointment, that doctor may charge the insurance company as much as $ 800.00 for that visit. I have seen the insurance report! And for a fallow up apt, they charge about $ 300 - 450 depending.
So, we have to take care of our selves, make a list of priority questions for the doctor, and make sure we get answers.
But I know, it is not easy.
I have read your posts, Abby, and I have experienced so many similar things over time in doctors offices. They have treated me as if I was an idiot, and I gues they were hoping I would beleave them
It is hard to find a good doctor. In 2 years, I have seen 7 neurologists. I have kept 2 of them. One is my " primary neurologist" He has realy helped me, and I consider him as having saved my life once. He repaired my cerebral aneurysm.
The other, is the one I mentioned in prior post, he diagnosed my neuropathy.
You see, I have found that especially with us that have diagnosis of neuropathy, it is very difficult to find a doctor that can "objectively" document regarding your neuropathy.
Many of the symptoms we have, are what we can feel, so they ( the doctors) write in their notes " subjective" and that do not fly as far as getting a diagnose.


To Ginni:

To your question, have I gotten a diagnose now.
The answer is yes and no.
The doctors are treating me for ideopatic (terrible) neuropathy with symptom control. My rheumatologist is treating me for vasculitis. I have been on Methatrexate for months, and just completed a 6 week Prednisone treatment.
She continues to periodically test me for underlying autoimmune disorder.
there must be one that is causing the neuropathy.
My local neurologist, is going to do a spinal tap in the nex couple of weeks, I do not have the time or booking yest. He is admitting me to hospital next week for a 72 hour EEG study. which is video monitored, and also a sleep study. This is due to some episodes at night the belive could be simple partial seizures.
Now, coming back to The Mayo Clinic.
The symptoms I mentioned above, has very scary to me. So at the Mayo Clinic, I refered to theese symptoms to the Neurologist there,
When the doctor said, " it sounds like a panic attach", I got very upset. Theese symptoms has woken me up from sleep. ( I do think that it could be due to possible sleep apnea, possibly bringing on theese possible seizures or Aura)
The Rheumatologist I saw up there at the Mayo Clinic, was very nice. She was a Fellow, so her assessment and recomendations had to be OK ed by a Rheumatologist by The Mayo Clinic.
He came in to briefly see me 10 minuets or so.

They both agreed with what my local rheumatologist had been doing, so they wrote in theyr notes, agree and continue with present treatment.
So, I really did noit have any further investigations as my local rheumatologist had hoped they would have done.
because my lkocal rheummy has been trying very hard to find an underlying reason for my neurological symptoms of small fiber neuropathy.
Thank you so much for your time to read this

They didn't do a proper work up at Mayo. There are tests that can be done to see if your immune system is working. T @ B lymphocytes for example. These are the cells responsible for fighting off infections. In my case, I have all I need but they are attacking me as a foreign object. The fight to flight response is involved as well. I guess my cells get confused like I do. This test should be done for you to help determine if you have an underlying auto immune disorder. A punch biopsy for PN is done too. I can't tell you how many tests I had, I just know it was four days of intensive, doctor to doctor. Ask about specific test you are having done. Look them up so you know what they are doing to you. Do you have a copy of any they did at Mayo? ginnie

hi Ginni
Yes, I have all copies of all tests. They did do some blood test for immunology, I think mostly that was already done. But, honestly, I thiunk they are difficult to understand.
The only other test they did at Mayo, was a "tilt table" test for autonomic reflexes. In this test was also includes a "sweat test" which was positive, so they confirmed small fiber neuropathy.
My neuropathy neurologist said it was not necessary with a nerve biopsy at this time. I do know about the punch biopsy. I think he felt he had enough evidence by neurological exame, EMG and NCS and the sweat test to confirm the small fiber neuropathy. The neurologist at Mayo also said the same.

But that is all fine and dandy, but we needed to find out the underlying autoimmune disorder. I think that is where the Mayo Clinic did not come through for me.
I should have gone to the John Hopkins.
No, I do not think I had the T cells done.
What I have done,m I have printed up the chart Liza Jane;s charts, and I am entering all my labs. So next doctor's visit, I will point out what is still needed regarding the auto immune.
But I thin k we have to cut off here, I do not want to steal off the thread from Abby regarding finding goog doctors.
Are we still on the right subject???