Be aware

Hello! I debated leaving this message but if I can help anyone else I hope so. I have autoimmune neuropathy. New neurologist wanted to repeat my EMG/nerve conduction test mine was done prior to back surgery. Diagnosed with severe axonal sensorimotor peripheral polyneuropathy. New neurologist wants to rerun test to check for CIDP so he said. I debated not doing this and I truly wish I had not. I make the appointment and had it done. I have been suffering from severe edema for over two months. He kept turning up the amps because no nerve response until he burned both my legs. Found out in ER the neurologist should have never ran the test with all the edema on my legs causes a faulty report. Ended up in emergency room to check for blood clots. It took over two hours to get in an IV line instead they put in a PICC Line that goes into the heart. The hospital would not draw the labs for the rheumatologist. I found a bunch of old labs from a previous rheumatologist and sent them to my new doctor. The hospital did not check to blood clots or see if I had extra fluid around my heart. I have pericardial effusion on top of cardiac autonomic neuropathy (also small fiber neuropathy). Did not monitor my heart for arrhythmias. Last night listening to the first seminar on the foundation of peripheral neuropathy and the speaker from Mount Sanani said your peripheral neuropathy test never needs to be reran again especially if you have had back and cervical surgery since. It will show radiopathy (misspelled) it did not show the neuropathy. After, the doctor was done he said I had no neuropathy. I left crying and saw my pain management doctor next and he said don’t listen to him we all ready know you have neuropathy. Do Not let a neurologist convince you that you have CIDP just to mess you over. I told him I have had two bunch biopsies showing small fiber neuropathy. He diagnosed me with idiopathic neuropathy without asking any questions. Today saw the rheumatologist with the labs I found him I discovered in 2014 tested positive for Lupus and in 2022 tested positive for RA. The old rheumatologist never treated me for either one. They are now checking me for immunosuppressive globulin disease since my gamma globulin levels are below normal and doing a specialized lab test for lupus. This would explain why as a child I spent my time in the hospital with pneumonia constantly. Here is what I am trying to get across if you feel the neurologist is on the wrong path cancel your appointment and run the other way. Thankfully, a person let me know there is a neuromuscular neurologist that’s on the foundation of on website last I checked there wasn’t one. My legs hurt from being burned from the amps being too high. They don’t look very much better this week. I canceled my follow-up appointment with this neurologist felt like I have had enough trauma. I still have my butterfly rash but told to stop all cortisone until I have additional labs done. Not sure how that’s going to happen with all my veins blown.