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Autonomic? Or issues with the brain?
I've been told some of these issues are automimic. I am a 21 year old female. I feel like my body is shutting down and my quality of life has gone down. I am so uncomfortable all the time. Usually autonomic has a secondary disorder with it but no one knows. My girlfriend thinks I should see a neurologist at Mayo but I am hesitant because of traveling cost and college. I don't want to go unless I absolutely have to. Has any one experienced all of some of these? I feel like a lot of these are related but I have no clue. Thank you for reading!
-stings/pinching throughout body when laying down, kind of like electric shock
-buzzing in feet and legs in bed also on my scalp
-possible fibromyalgia (Autoimmune doc suspects this)
-bladder leakage (I have to wear special undergarments and all tests were normal)
-hallucinations and mood disorders
(Neurological diseases??) Many psychiatrist has doubted my schizophrenia because I have really good communication skills and I don't act like a typical person who does. Also I am either laughing a lot or crying a lot. I am often told I am emotional)
-blackness flashing in vision, chest pain pounding, headache pounding (happens together and for 10 seconds)
-heart palpitations (I am on meds, still happens)
-possible carpal tunnel (multiple docs suspects this, getting tested in a few weeks)
-feeling heart beat throughout body
-hiccups (daily since July/August)
-joint pain (and stiffness) in shoulders, wrist, ankles
-hands shaking, not all the time
-back pain (I have 2 different spots where it hurts. I've been going to phycial therapy but not a lot of improvment. It hurts in the bottom half in the middle when I lay down and the bottom right side really hurts. I have growing spinal rods on my spine due to scoliosis. All tests are normal from the back pain complaint)
-head/eye shocks
-neck pain
-tachycardia (unknown cause, heart is normal. got diagnosed here at Mayo. I am on Ivabradine and Propranolol)
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@fuzzlepuff rereading your post, it seems a dysautonomia clinic would be really helpful.
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1 ReactionI can't do brain MRI but I did have a Myelogram of my spine. Things seemed normal.
I do have a positive ANA test and I have been tested multiple times and seen 2 rheumatologists. Both said it's a false positive.
I don't understand why they said it was a false positive when you have symptoms. My rheumatologist is cautious about diagnosing but with positive testing, continues to monitor people. Treatment is usually some suppression of the immune system so of course they are careful about prescribing, but I hope you were listened to. It may be that autoimmunity is not the cause but with a positive ANA, which some healthy people do have, it should warrant some monitoring yearly I would think. Did any doctor offer that?
No they didn’t seem to see the need to monitor me but I also didn’t have as many symptoms back then than I do now.
Hi fuzzlepuff. I have CRPS Type 2 which includes Autonomic and Autoimmune Disorders. CRPS also causes extreme Brain Damage but I'll save that info for another day. Good luck and God Bless in your search for answers that will find you some physical relief.
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1 ReactionThank you!!
Does anyone know if this sounds like MS? I’ve been told by some others that it is very consistent with MS and another person said they have it and said they have the same symptoms as me. I am just so confused. I’m bringing all this up tomorrow to my doctor someone local
I had two ANA tests over the time I was diagnosed with Transverse Myelitis. Each time I saw a rheumatologist and it was decided I did not have lupus. But a positive ANA is not uncommon in TM. Can you do a spinal MRI?
I’ve had a Myelogram done and everything was normal. My case is so puzzling. Everyone is just at a loss. It’s so frustrating and I cry almost every day because I feel terrible.