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Has anyone had a tilt table test or examination?

Autoimmune Diseases | Last Active: May 31 8:06am | Replies (36)

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@artemis1886

I have tested positive for four years for the Epstein Barr virus. I am now being tested for CIDP. Which my understanding is advanced neuropathy.
CAN-started immediately after my second covid shot and I took Moderna through the military before the public took the shots. We are stationed in Germany my husband works for the Department of Defense. My youngest adult child has congenital heart disease he has an ICD (pacemaker/ defibrillator). My heart started stopping in my sleep. Then would jump and my husband could feel it. He felt my body jump. No history of sleep apnea. I had a one month Holter monitor test showing my heart rate too slow or too fast. Not eligible for ICD because due to the neuropathy I do not have the nerves to shock or pace the heart back into rhythm. Mine is autoimmune. Being a nurse I knew what this meant. When the electrophysiologist gave me the results I told him he did not know what he was talking about. The electrophysiologist said I had 8 years left too live and four of them are gone. I told my neurologist and he told me the gold standard for verification is biopsy for small fiber neuropathy. Needless to say it came back positive and we repeated last year and the SFN is worse. I had to go back to c the electrophysiologist to apologize. Treatment truthfully none. The SFN also affects your organs -gastroparsis,bladder and so forth. We tried metoprolol succinate it raised my glucose levels, swelling, and caused problems with my kidneys. Discontinued . We are looking at IVIG therapy it takes at least six months for symptoms to get better. We are also looking at DMADS for the autoimmune portion. I was on IVIG therapy from 10-18 when I fell off my parents insurance. Diabetes does not run in my family. My ANA, sed rate, CRP and compliment C all elevated showing autoimmune problems. I test negative blood work for lupus and other autoimmune disorders. Rheumatoid Arthritis runs in my family. My grandmother, aunt, mother nephew and sister have it. The doctors are also we looking at a spinal tap it can show autoimmune and other problems. The new neuromuscular neurologist is repeating the EMG/nerve conduction test for the CIDP because it is an autoimmune form of neuropathy.
Chronic inflammatory demylinating disease -CIDP
Check my postings. I don't feel my hands constantly cutting them and getting stitches. I do not feel my feel or legs. I wear compression hose because my legs constantly swell up. I have problems with nausea and vomiting due to the gastroparsis. I also have really bad tremors and my husband has to cut up my food and hold the glass for me to drink. That's the motor neuropathy.

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Replies to "I have tested positive for four years for the Epstein Barr virus. I am now being..."

My 23 yr old son suffers from SFN (some LFN). You mentioned you have tremors. My son has head to toe tremors that are getting worse over time. They diagnosed it as “tremors” but never give an exact reason why. He shakes so bad…especially when he is concentrating on something like trying to pour into a cup, writing with a pen and also when his adrenaline kicks in like watching an action movie or playing a video game…is that what you experience with the motor neuropathy? He also has Gastroparesis, dysmotilty in his esophagus, stomach & colon, POTS, Dysautonomia, Tachycardia/Bradycardia, Hypertension, Autoimmune disease, systemic Eosinophilic disease & Systemic Mastocytosis…He’s had multiple rounds of IVIG when he was in his teens as well. Currently he’s been experiencing severe pain in his lower back/spine for over a year and can hardly walk anymore (uses a wheelchair & walker). X-Ray, MRI & CT scans show nothing is structurally wrong. They say it could be his nerves but they don’t really know. I’m desperate to find answers to help him.
We are currently trying to get him to Mayo for treatment.