I know what the testing involves. I am an RN. I have read so much about this in medical journals I am sick of it. Germany since 1966 has used IV alpha lipoic acid and has had great luck. The pills do not work and the United States is just now looking into this. People who get CIDP is over 96% men. I am a female. The likelihood of actually having this is slim as a female. My testing was done in 2018. My EMG/Nerve Conduction test. It hurt. It was done after the nerve damage to by body. The EMG/nerve conduction test felt like fire all over my body. The physical therapist can’t use tens units on me either. I have had two biopsies for small fiber neuropathy both positive. I was diagnosed with severe axonal sensorimotor polyneuropathy.
Spinal taps hurt like the dickens. I had one before I lost consciousness with bacterial spinal meningitis. I will never have another one. It had to be patched because of leaking spinal fluid. The only reason I am even considering being tested is I have been positive for over four years for the Epstein Barr virus which is part of CiDP. The Epstein Barr virus is nothing more than the Herpes Virus or mononucleosis which the Herpes Virus when I got with the bacterial spinal meningitis they believe a nurse had it and transferred it to me by not wearing gloves. I had never had cold sores and did not carry the virus. It is not going to change the progression of this disease being tested. My gamma globin levels are low. I took gamma globin from 10-18 until I fell off of my parents insurance. Most people are not as far as I am in the disease or the other percentage it has not affected their organs and they are diabetic. I am not diabetic nor does it run in my family. Due to the neuropathy it is affecting my organs heart, liver, kidney, intestines and the pancreas. I have tremors that are caused by the neuropathy along with lots of dizziness and balance problems. I am reconsidering being tested.
I originally said heck no. The bacterial spinal meningitis left me with a lot of nerve damage as it was. Two weeks unconscious, hallucinations, then severe migraine's, seizures ( I never had prior side effect and seizure meds I am allergic to) and I was on IV antibiotics for three months along with pills for another three months. . I lost the majority of my memory. I had to relearn how to drive, read and write.
There are days I do nothing but fall and my husband has to feed me. I just turned 62 eight days ago. When the neuropathy moved into my heart I was given 8 years to live four of them are gone. Nothing can be done for the bradycardia/tachycardia.
You have to have nerves to shock for a ICD (pacemaker/ defibrillator) I do not have the nerves because of the cardiac autonomic neuropathy. They say you can’t die from this but once it moves into your organs there’s nothing they can do. Yes, they (doctors) finally admitted you can die from it.
What does run in my family is Rheumatoid Arthritis. My grandmother, mother, aunt and my nephew all have it. On top of RA they have Sojourn’s Disease.
Everything is thrown off on me because of the damage neurologically of the bacterial spinal meningitis. We know my neuropathy is autoimmune I tested 13 for RA and you have to test 14 to be considered positive. I also have a positive diagnosis of lupus but no one can find the labs but I do have the butterfly on my face but test negative. The only thing this will do is be another test. We shall see but currently non of my symptoms can be reversed they would have had to begun treatment before it moved into my heart along with when my tremors first began. I do not have the antigens for Parkinson’s and DBS ( Deep Brain Stimulation) does not work on neuropathy patients.