Autonomic nervous system disorder: No diagnosis or help yet

Posted by joannemm34293 @joannemm30809, Sep 14, 2021

Two years ago I started having what appears to be possible autonomic nervous system malfunction. It started out with pins and needles and numbness in all of my extremities, visual disturbances, bowel disturbances, even paralysis of parts of my body would just go dead numb. What is worse is that these episodes come on out of nowhere and they have progressed to where I suffer almost every day now. The worst part of these episodes are that my spatial awareness, the way I feel sensory wise is totally off. So far no doctor has been able to figure out what's wrong with me from a neurologist to endocrinologist to cardiologist. I even have tachycardia many times during these events and from head to toe I feel absolutely sick head to toe. I am at my wit's end I need to find some doctor that knows what's going on and if this is disorder know me or an autonomic nervous system malfunction I need help. I just cannot believe in the United States of America that so many different doctors I've seen over 2 years with dozens upon dozens of tests and blood workup and no one can figure this out.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases group.

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.

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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

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@oldkarl

@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.

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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.

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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

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@joannemm30809

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

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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.

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@colleenyoung

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.

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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?

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@joannemm30809

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?

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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.

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@joannemm30809

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.

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@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.

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@oldkarl I so agree going threw this right now screaming in pain

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@joannemm30809

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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You need an sfn punch biopsy ..small fiber nerves cause all that and autonomic dysfunction ..i have it all .caused by cipro instant full body damage ..

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@oldkarl

@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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@jwillits8

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

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@jwillits8 Glad to hear that. We would all be better, I believe, if we put a little more effort into using real science in our lives, and genetics is a great part of that. If you find ANY evidence of disease which you did know previously, you will know just that much more about how to live your life. Way to go. On much of the literature coming from these genetics houses there is a line which says something like "These results are for recreation only. Persons should not change medicines or diet or make other important decision based on these results alone." This line is as much for the protection of the genetics house as for the patient. Before you do anything drastic, be sure to check with more of the generally recognized and clinically proper genetics houses, such as Ambry Genetics, ALNYLAM, Dante, etc., who cooperate with Medicare or other insurance companies.. A good geneticist can help you. I suspect nearly all the current majors are pretty accurate, but only certain ones are certified by insurance companies as being accurate. I have checked my results from Sequencing, Ambry, AncestryDNA, AYASS, and a few others, and they are very close to giving the same results, even with the mini-sequencing. Each has a few pieces which only they note. However, the list of pathogenic or probably pathogenic hits I got from Sequencing.com is almost entirely echoed by the others as well as by medical clinics and diagnosticians across the country.

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