Autonomic nervous system disorder: No diagnosis or help yet

@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.

@jwillits8 I just received my International Lim Girdle Muscular Dystrophy Conference blurb fro the SPEAK Foundation. Now, I am not in any way certain that you have LGMD, but there is some possibility there. And This group is very active and very good, and you might learn a lot from them and their conference this weekend. Both The Speak Foundation.com and Sarepta.com are great for folks struggling to gain control of their own lives.

Again Blue Cross Blue Shield has denied me getting a MRI on my spine and brain stating I need to go to Physical therapy first on my spine before any MRI will be approved.
Even though my symptoms for 1.7 years now and getting worse everyday from pins, needles, numbness, paralysis of all parts of my body and visual disturbances, facial numbness and horrifying sensory awareness altering etc yet BCBS again has denied my neurologist and PC doctor the request for MRI.

What can I do? Is PT WISE TO DO ON SPINE without x-rays showing possible impinged spinal cord?? I feel so violated by BCBS.

This to me is criminal and cruel yet I have no hope for getting much MRI of brain and spine.

I did not see anything in any threads regarding dysautonomia as It relates to the autonomic nervous system. Not too sure if this is the appropriate link to be posting my questions but I could find no other discussion and I know Mayo clinic is pretty big on autonomic nervous system malfunctions so I'm not too sure if I've missed some of the discussions on this but here are some of my questions:

I saw my gastro doctor today and she agrees with my cardiologist from 2 years ago and my primary care doctor that all my symptoms relate to Autonomic nervous system breakdown and dysautonomia.

My family doctor is going to refer me to Mayo Clinic in Jacksonville FL but my question is with the 15 Dysautonomia categories I can NOT see where I fit into any of them UNLESS you can have autonomic nervous system problems without dysautonomia.

Been suffering two years now. This is ridiculous. I hope Mayo and my insurance allow me to go there for a exam.

I need a diagnosis quickly. Tired of this

I just saw my gastro doctor today and she agrees with my cardiologist from 2 years ago and my primary care doctor that I definitely have symptoms that are pointing to an autonomic nervous system problem but I don't see how I fit into any of the 15 categories called Dysautonomia. My primary care is going to try to get me referred to the Mayo clinic in Jacksonville but who knows if my insurance will approve it, probably not as usual. Blue Cross Blue shield is slowly murdering me.

I've had nerve conduction test and EMGs and CK blood workup and I have no muscle wasting or muscle weakness at all. I don't have any problems with my walking or the gait of my walk nor do I walk on the balls on my feet and my heart is strong and I've been through stress test and nuclear CAT scans of my heart and I have a loop recorder in my heart and all the readings from my heart are normal rhythm no problems with the heart except for what I've had my whole life which is an irregular heartbeat but I don't have any muscle wasting or anything like that and nerve conduction test and blood workup for muscle wasting and all that has come back as negative.

It seems like it is the autonomic nervous system that's malfunctioning but I can't seem to see where I fit into the very specific 15 categories only for dysautenonia

Hi Joanne, I merged the 3 discussions you started into one discussion that is visible in 3 related groups:
Cerebrovascular Diseases
Neuropathy
Heart & Blood Health

I did this so your story is in one place for you and others to follow, and so it is visible to all relative members. I, too, hope that you can get to Mayo Clinic for answers.

I wonder if fellow members @johnwes5819 @jenniferhunter @slynnb @adamek3638 @widman @neeci may have experiences with dysautonomia to share with you.

Dysautonomia International has a useful resource in their Patient Advocacy Tips page. https://www.dysautonomiainternational.org/page.php?ID=108

It is really hard work to get answers. I hope member experiences and this information helps.

Thank you for responding and doing that and connecting all those threads of conversations with other groups for me. I've been suffering going on 2 years November 2019 and it seen several neurologists and endocrinologist and cardiologist and primary care doctors and been in and out of the hospital and had tons of tests done except for an MRI of my spine and lots of blood work I've done and my gastro doctor today agrees with the first heart doctor from 2 years ago that I've got some type of autonomic nervous system breakdown but like I said I can't see where I fit into any of the 15 categories for Dysautenonia so I'm wondering if autonomic nervous system disease and malfunction can be present without having to fit into one of those 15 categories?

You're asking all the right questions, Joanne. These are questions to ask of a specialist team of doctors. Fingers crossed that you'll get an expert team dedicated to you at Mayo Clinic. I suggest making a list of questions. And keep a journal of symptoms and triggers.

@joannemm30809 We all know how that goes. Sometimes the best doctoring comes with a lot of screaming and stomping and stepping on toes to get the referral across.