Autonomic? Or issues with the brain?

Posted by fuzzlepuff @fuzzlepuff, 2 days ago

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)

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Have you considered alternate therapies? Ever tried acupuncture, EFT, or anything along those lines?

I was extremely hesitant to try acupuncture because of my fear of needles, but I had some issues that I could not resolve. Getting "needled" helped me almost immediately.

These don't work for everybody, but at the worst they won't harm you, and you can find EFT videos on YouTube that you can practice for free.

Might be worth a try.

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I forgot to add that I have memory issues and my mind loops over and over about my childhood.

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@scottrl

Have you considered alternate therapies? Ever tried acupuncture, EFT, or anything along those lines?

I was extremely hesitant to try acupuncture because of my fear of needles, but I had some issues that I could not resolve. Getting "needled" helped me almost immediately.

These don't work for everybody, but at the worst they won't harm you, and you can find EFT videos on YouTube that you can practice for free.

Might be worth a try.

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I have not!! I bring it up with my doctor.

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@fuzzlepuff

I have not!! I bring it up with my doctor.

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Your doctor may dismiss it as outright quackery.
But they don't know everything. If they did, you wouldn't be in this quandary.

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@scottrl

Your doctor may dismiss it as outright quackery.
But they don't know everything. If they did, you wouldn't be in this quandary.

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True. I'll keep that in mind!!

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One last thing, I lose oxygen when I sleep. Heart and lungs are normal for my body. We are unsure the cause. I use oxygen at night. Don't have sleep apnea.

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This sounds like it could be related to toxicity. To me. I'm not a physician.

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Have you been tested for Lyme disease? Are you on any meds that have side effects that are relevant? You have a rheumatologist: Do you have a positive ANA, RF or other testing?

Often my family members have benefited from functional medicine (or integrative) due to the need to connect all these symptoms somehow.

I have a neurologist I have used for 24 years, and you might want to start a relationship with one if you can. I don't know where you are but a dysautonomia clinic might help too (MGH has one).

Sorry to suggest more doctors! What meds are you on besides the ones mentioned?

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@fuzzlepuff
Have you had MRIs of head, cervical spine and lumbar spine? Have you had EMG nerve conduction studies of upper and lower limbs? Have you had a full neurological blood work panel done by a neurologist? You should be able to find good specialists nearby depending on your location (don’t necessarily need to travel to a Mayo Clinic initially).

Did you have covid and/or vaccines? Have you been tested for long covid?

Have you been checked for pseudobulbar affect (laughing/crying)?

1. https://www.mayoclinic.org/diseases-conditions/pseudobulbar-affect/symptoms-causes/syc-20353737

2. https://my.clevelandclinic.org/health/diseases/17928-pseudobulbar-affect-pba

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@dlydailyhope

@fuzzlepuff
Have you had MRIs of head, cervical spine and lumbar spine? Have you had EMG nerve conduction studies of upper and lower limbs? Have you had a full neurological blood work panel done by a neurologist? You should be able to find good specialists nearby depending on your location (don’t necessarily need to travel to a Mayo Clinic initially).

Did you have covid and/or vaccines? Have you been tested for long covid?

Have you been checked for pseudobulbar affect (laughing/crying)?

1. https://www.mayoclinic.org/diseases-conditions/pseudobulbar-affect/symptoms-causes/syc-20353737

2. https://my.clevelandclinic.org/health/diseases/17928-pseudobulbar-affect-pba

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I was thinking the same thing. I had similar symptoms years ago and was diagnosed at Mayo Rochester with Transverse Myelitis. Its an inflammation of the spinal cord. I would suggest an MRI with contrast of the brain stem and cervical spine.

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