Autonomic nervous system disorder: No diagnosis or help yet

They've ruled out diabetes, they've ruled out cancer since they did a very expensive blood test called perineoplastic blood test. They've ruled out MS. They did a cat scan looking for an adrenal tumor and ruled that out. I've had blood work up of every single thing you can think of and it's all come back normal. I've had stool samples done and they came back normal. I had a EEG and that was normal. I had a nerve conduction test and that was normal. I had an EMG test and that was normal even though I have continual muscle twitching from head to toe for the last 1 year. I went to the ophthalmologist because I have visual disturbances and he sees nothing wrong with my optic nerve in my eyes.

I have a loop recorder implanted in my chest because I have had an irregular heartbeat for most of my life which is controlled by taking metotoprolol and every time I have these what I call episodes I sent a loop recording into my cardiologist and even though I have tachycardia sometimes during these events my heart rhythm is absolutely normal. I've had stress test and nuclear CAT scans of my heart and it's all normal. I had the HU antibody test done once again looking for cancer and that came back normal. I had a test looking for thyroid problem for Lyme disease for vitamin deficiency for hormone imbalance and everything came back normal. I have no idea what's wrong with me but Blue Cross Blue shield once again today has denied the request to have an MRI of my spine and a new MRI of my brain because the last MRI of my brain I had was 2 and 1/2 years ago and it did not show any tumors or lesions from MS but over the last 2 and 1/2 years things could have changed where those lesions might be showing up if I do possibly have MS.

I cannot get any of these doctors to really dig into this they all want to blame it on anxiety my neurologist said I have benign fasciculation syndrome and that's why I have muscle twitches all the time and for me just to go take anxiety medicine and all that nonsense. I'll have patches of skin that just go numb. Huge patches of tissue from my back wrapping around in my belly that goes numb. Pins and needles in my hands my feet my right calf always goes numb pins and needles all over creepy crawly feeling crap looks like feels like worms under my skin around my eyebrows and my lips. Yet none of these doctors know what's going on. They all want to try to blame it all on anxiety and I'm too through with it.

None of the doctors here in Orlando or Tampa area do what's called a sweat test to possibly rule out Dysautonomia and the only clinic that does it is the Mayo clinic in Jacksonville and about 1.5 years ago the neurologist tried to get me an appointment there and they read over my file at that time and denied the request to see me to do the sweat test which I thought was insane because I have a lot of symptoms of autonomic nervous system malfunctioning.

So I'm not too sure where to go or who to turn to and I'm so pissed off right now at Blue Cross Blue shield I'd like to sue the doctor in the pre-authorization department that repeatedly is denying the MRI of my spine which is never been scanned at all looking for maybe impinged upon spinal cord

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@jwillits8 Yes, sometimes it seems that Mayo and most similar orgs are only helpful for the medicos who sign on with them and collect pay. That is why I ended up getting my own genome analysis, even though it is only a partial and cost me extra money. However, some of the houses are either free or inexpensive. Ambry Genetics is a good place to start. Some places would be good if they would choose to work with insurances, such as medicare. Until they do, their service must be considered second-rate. Now, about your case. My first bet would be some form of Myeloma, probably Amyloidosis. The narrowing function goes this way: Cancer > Myeloma > Amyloidosis > (Gelsolin {GSN}, Apolipoprotein, Lect2, LAMA2, etc.) A second train would by a Congenital Limb Girdle Muscular Dystrophy {LGMD}, a Neuro-Muscular Disease which is closely related to Myeloma. Types I suspect in your case include such as Duchenne, Fukuyama {FKRP}, Fukutin {FKTN, probably with Walker-Warburg}, etc. most of this stuff, you can get directly from various internet sources, such as National Institutes of Health (NIH), or groups such as http://www.OMIM.org/entry/GSN (XXXX). Now, don't let anyone tell you that you just have anxiety. Jackson Labs Human phenotype Ontology database is a fantastic source for frustrated, sick people such as you and I. But do try Ambrygen.com, and get the choice of tests. Or get the mini-analysis for about $70 from Sequencing, Apollo, etc. Or, if you can afford it on your own, bet the whole (100%) sequencing from Sequencing.com, or one of the others.

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@oldkarl I’m waiting on results from the mini sequencing.com

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I am in a similar position here in Tampa., FL. Have you found any help since this post?

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nothing really to date, how do I monitor my outpouching size on a regular basis? My united healthcare community plan basically rejects most requests let alone MRA's on a regular basis for monitoring purposes. I'm the last of my biological family, both parents and two brothers died from heart/stroke issues which has me on alert.

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Such a good question, Glenn. Aneurysms are followed with brain imaging studies (CT, MRI) over several years to ensure they are not growing.

You might find this article helpful:
- Brain Aneurysms Need Watching, Not Worrying https://www.loyolamedicine.org/about-us/blog/brain-aneurysms-need-watching-not-worrying

The title of the article seemed to be speaking exactly to you. I know you are worried, given your family history. Have you worked out a monitoring schedule with your doctors that makes you feel comfortable?

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