At a loss, multiple consultations still no answer...any idea?

Hello! This really is an amazing community for people who have other than the most routine symptoms!
For a long time, I, too have been going the route of being told "you're fine, you have anxiety, you need to do X, blah blah blah". This while knowing something was wrong. I, too, have an implanted loop recorder. And I have begun to feel kind of crazy when I see this list!
Turned out to be several things, long undiagnosed celiac disease, pernicious anemia, UCTD, AFib, labile hypertension, neuropathy, cutaneous Lupus, on and on, most recently Pure vasovagal response as the result of a Tilt Table Test.
That is a dysautonomia!
There's a drug to raise blood pressure! I am not starting it unless things get way worse! Too many pills already! The side effects of one creates the" need" for another ad nauseam.
(Note: I am investigating Hawthorn berry for AFib, my sister told me about it.)
And the rest of it? The symptoms?
For now, I am going to live with it. I am blessed not to have severe problems, just a lot of them, and, at the moment, grateful to have a diagnosis of dysautonomia explaining SO much?
I wish you all the best health-wise and that you find peace!

i'm very relieved to hear your doctors haven't been pushing meds because that in itself can be the cause of many "extras". And kudos to you for not wanting to be on them.. Your doctor's holistic approach is a smart one although having been there, I understand completely how sucky that feels when you have discomforts and symptoms and just want help.

As hard as this is to hear...once you navigate testing and results...it may come down to chronic conditions and understanding how to gain acceptance and learn how to manage for a better path forward. Central Sensitization Syndrome really seems to line up with all you describe.

The confusion, anxiety and frustration is actually fueling your fire. What do you do to calm yourself?

In pain rehab, I learned the 5 P's:

Pause
Process
Perspective
Patience
Plan

I saw my gastro doctor today and she agrees with all my multitude of symptoms for almost 2 years now November 2019 that she agrees with my cardiologist from 2 years ago and my primary care doctor that all my symptoms are pointing to an autonomic nervous system malfunction. So my family doctor's going to try to get me referred and my insurance to approve it to go to the Mayo clinic in Jacksonville since we hear they are pretty up on autonomic nervous system issues. My question is if autonomic nervous system issues only pertain to dysautonomia And I reviewed the 15 categories of dysautonomia yet I don't see how I can fit into any one of those 15 categories unless you can have autonomic nervous system problems without ever having to be put into one of those 15 categories.

This is great news! I'll keep my fingers crossed. Definitely Dr. referrals to Mayo Clinic are helpful. Keep us posted.

I have persistent and worsening pins, needles, numbness, paralysis in all parts of my body, including my face and it's worsened over past 1.5 years.

Had MRI on neck two years ago and it showed cervical stenosis and calcification and narrowing of spinal fluid canals on both sides of vertebrae with myelopathy.

Since then my feet, calves, hands, arms, mid back, belly and lower face go numb. Pins, needles. Etc

My insurance company BCBS has denied three times for MRI of spine or brain. They state I need to go through PT first on my back before MRI is approved.

That seems backwards to me. Why would you to PT on the spine when you have no x-rays to show possible spinal cord impingement etc??

I am at a loss. Could Mylopathy of my neck with stenosis and narrowing of spinal fluid in neck cause all these symptoms etc?

All specialist are at a loss. I've had tons of tests and blood work but never MRI on back.

I’m very sorry that you’re battling both your health and your insurance. Our country’s medical insurance, or often lack there of, is woefully unjust and unequal. I had fabulous insurance when I was employed, but lost it when I had to resign as I got too ill to work. Have been only doing contract work since and now on Medicaid, which many doctors do not accept and you don’t get approved for a lot tests and procedures.

As a patient, I do not have much advice to offer for your health issues, other than to try to remain positive and keep pushing your providers for answers. Doctors can often switch up orders for tests so that insurance providers will approve them So, I’d recommend you keep pursuing the MRI. An MRI is often key to ruling out what is or isn’t the cause of one’s neuropathy.

Have you had the gamut of blood labs to also try to diagnose what you may have? Also, have you sent in an appeal to BCBS? I did that twice, wrote up all my issues, why I needed the procedure, stated that my doctor says I need the procedure, I couldn’t afford it, etc., and I won.

I hope you find answers soon.

I have had just about every bit of blood test done and many other tests and x-rays yet all negative except two years ago a MRI of my neck showed cervical stenosis with herniation and myelopathy as well as narrowing of spinal fluid on both sides of vertebrates in heck.

Good news just received Tonight!! My primary care doctor appealed to BCBS and won for MRIs on spine and neck. This was after three denials of these MRIs. My doctor is going to refer me to Mayo so hopefully they are willing to help me get a diagnosis.

I'm starting to believe it is autonomic nervous system disease. Horrible. These symptoms are relentless and scary.

I’m glad you’re getting the MRIs, they offer hope in finding suitable treatment. Please let us know what your providers find.

I saw my gastro doctor today and she agrees with all my multitude of symptoms for almost 2 years now November 2019 that she agrees with my cardiologist from 2 years ago and my primary care doctor that all my symptoms are pointing to an autonomic nervous system malfunction. So my family doctor's going to try to get me referred and my insurance to approve it to go to the Mayo clinic in Jacksonville since we hear they are pretty up on autonomic nervous system issues. My question is if autonomic nervous system issues only pertain to dysautonomia And I reviewed the 15 categories of dysautonomia yet I don't see how I can fit into any one of those 15 categories unless you can have autonomic nervous system problems without ever having to be put into one of those 15 categories.

The only medication I'm taking is metoprolol and it's 25 mg in the morning and 25 mg in the evening.

I'm very hesitant on getting any pharmaceutical antidepressants or anxiety. I need to find out why I have all these persistent progressively getting worse neurological symptoms that have no rhyme no reason and have no trigger for them just occurring out of the blue everyday.

The doctor never prescribed any nerve medication for everything including my muscle twitches throughout my body He just said it's benign fasciculation syndrome and I need to go get a hobby or go do yoga or go learn meditation etc but he said it's benign and I just need to learn to live with all the muscle twitching so I have no medicine for that either.