Autonomic nervous system disorder: No diagnosis or help yet

Posted by joannemm30809 @joannemm30809, Sep 14 7:18am

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.

Hi @joannemm30809, welcome to Mayo Clinic Connect. First, let me thank you for your military service to our country. Our community forum of Connect is compromised mostly of members such as yourself who have come in search of answers. Together, we help each other through our shared experiences, along with offering hope and encouragement.

All of these unexplained symptoms have to be just incredibly frustrating and frightening for you. And having served in the Navy, I’m pretty sure your as brave as they come. But when our bodies let us down, that is a game changer which can leave us feeling pretty helpless.

Since your illness isn’t anything I’ve experienced, I’d like to introduce you to @rwinney one of my fellow mentors who is so knowledgeable in this area and is actually corresponding with members going through similar medical issues as yours. I’m hoping she and other members in this Autoimmune group might be of assistance to you in finding some answers or at least steering you in the right direction to get some relief.
https://connect.mayoclinic.org/comment/635364/
Have you tried contacting Mayo Clinic for an appointment? It begins with a simple phone call.
Here’s a link to Mayo’s appointment page where you can find the information you’ll need for contacting the Jacksonville Campus.
http://mayocl.in/1mtmR63

REPLY

Hi @joannemm30809, I'd like to add my welcome.
I agree with @loribmt that you may wish to consult with experts at Mayo Clinic. It sounds like you would benefit from the advantage of Mayo's multidisciplinary and team approach. Call to learn more http://mayocl.in/1mtmR63

Autonomic Nervous System Disorders cover a spectrum, so I also added your message to the Cerebrovascular group here: https://connect.mayoclinic.org/group/cerebrovascular-diseases/

This discussion about autonomic neuropathy may also be relevant for you as you continue your quest for answers.
– Autonomic Neuropathy https://connect.mayoclinic.org/discussion/autonomic/

I see that you have been to many specialists. What conditions have been ruled out? What conditions are being investigated?

REPLY

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

REPLY

I'm so sorry for sounding so angry and frustrated but after 1.8 years of this and episodes happening every day now and no luck in sight with doctors finding out what's wrong etc I am just very very upset. And then to have BCBS deny much needed MRI's of the spine and head to rule in OR rule out if the spine or brain are the culprits etc is very upsetting.

REPLY
@joannemm30809

I'm so sorry for sounding so angry and frustrated but after 1.8 years of this and episodes happening every day now and no luck in sight with doctors finding out what's wrong etc I am just very very upset. And then to have BCBS deny much needed MRI's of the spine and head to rule in OR rule out if the spine or brain are the culprits etc is very upsetting.

Jump to this post

@joannemm30809 Oh my dear, please don't apologize. You have every right to be frustrated given your cirumstances.

Hello and welcome, I'm Rachel, and I've been through a very similar experience of thinking I was going crazy with my absurd symptoms that doctors could never quite pinpoint, with a few exceptions of legit diagnoses that came along such as small fiber neuropathy. Has your neurologist tested you via skin punch biopsy for small fiber neuropathy? You describe many familiar symptoms.

Through a lot of tests, meds, procedures, therapies, etc, etc… over 3 years, and being denied to be seen by Mayo Clinic, I was agitated. Mayo referred me back to my local doctors. Nope, not giving up! I researched my butt off and found that Mayo Clinic offers a pain rehab program taught by Dr. Sletten. I had first found his video presentation on Central Sensitization Syndrome (CSS) and my whole world opened up. It was a light bulb moment, brought me to uncontrolled tears because he spoke to me and described what I had been suffering from with failed explanation by any other Dr.
https://technolag.com/dr-sletten-discussing-central-sensitization-syndrome-css/
I've attached the CSS link for you to watch and hope, if nothing else, you'll be educated and know there may be help for you. I attended Jacksonville's Pain Rehabilitation Center (PRC) and I'm very excited to know you live nearby in case it makes sense for you.

Perhaps you still need to get to the bottom of things, but keep this in your back pocket should your health challenges not iron out.

Here is a link to the pain rehab center as well:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
I'm wishing you all the best as you continue to navigate your health challenges. Do you mind getting back to me with your thoughts on what I've shared?

REPLY

Several neurologist never did a small fiber neuropathy skin test so I will request this and see IF BCBS will approve to have this done.

Thank you for the additional info and links!! I will review them tomorrow and get back with you on those links.

I just can not understand why so many doctors in the U.S have no idea what is going on regarding so many people with these symptoms. It seems to me so many doctors do not want to be bothered with difficult cases.

I feel so let down, betrayed, ignored and pushed to the side by so many doctors.

I wish Mayo would accept more patients who have many ANS symptoms in order to help us get the correct diagnosis and help us with some sort of remedy or action plan to live with these horrible debilitating symptoms.

REPLY
@joannemm30809

Several neurologist never did a small fiber neuropathy skin test so I will request this and see IF BCBS will approve to have this done.

Thank you for the additional info and links!! I will review them tomorrow and get back with you on those links.

I just can not understand why so many doctors in the U.S have no idea what is going on regarding so many people with these symptoms. It seems to me so many doctors do not want to be bothered with difficult cases.

I feel so let down, betrayed, ignored and pushed to the side by so many doctors.

I wish Mayo would accept more patients who have many ANS symptoms in order to help us get the correct diagnosis and help us with some sort of remedy or action plan to live with these horrible debilitating symptoms.

Jump to this post

Understood. Keep persevering Joanne and being your own advocate. That's what it takes when things get complicated. You got this!

REPLY
@rwinney

Understood. Keep persevering Joanne and being your own advocate. That's what it takes when things get complicated. You got this!

Jump to this post

What is so sad and frustrating is that my neurologist in Tampa Florida knows all of these symptoms that I've been suffering with for almost 2 years now November 2019, he is aware of all these what appear like neurological symptoms and sensory overload sensations yet he's never done a small fiber biopsy never even talked about it and he's never requested to do an MRI of my spine to see if I have any herniated disc that are impinging upon my spinal cord etc. I do not understand why these specialist just want to immediately blame it on anxiety and send you on your way to start taking anxiety medicine which I refuse to do. This is the second neurologist I've seen when was in Augusta Georgia and he never did or even talked about a small fiber biopsy or doing an MRI on my spine. The neurologist in Augusta did do an MRI of my cervical neck and it found that I have cervical stenosis and myelopathy of my neck and in some areas around C5 and C6 there is reduction of the spinal fluid that runs along both sides of the spinal column that then are that spinal fluids to continue down both sides of your spine and it shows a narrowing of the spinal fluid in my neck on the MRI. That's the only bona fide legitimate diagnosis I have over 2 years is cervical stenosis and myelopathy of the neck with calcification of the vertebraes.

The endocrinologist here in Lakeland Florida did do as thorough testing as she could do and from an endocrinologist standpoint she could not find anything wrong. My family doctor is the doctor that all these specialists are pushing me back on.

I feel like these specialists do not want a complicated patient they want something quick and easy that they can see on an x-ray etc and anything complicated they don't want to be bothered with and they pawn you back off on your family doctor. That is what's happened to me right now. The neurologist has pushed me back on my family doctor when all my symptoms are of a neurological issue.

I have just never been so let down over the last two years from cardiologist to neurologist that absolutely have no clue What's going on but a lot of the tests that they could have done on me they never did. Like the small fiber biopsy or the MRI of my lumbar and thoracic spine. Yet now Blue Cross Blue shield is refusing to approve an MRI of my spine even though a lot of my symptoms could be coming from my spinal cord. So I've been let down not only by many doctors but Blue Cross Blue shield.

I have been reading over the last one year from people around the world that have the same symptoms that I have it's almost like I wrote their post yet it's their symptoms but it's mine as well yet none of these doctors know what's going on or they just don't want to be bothered. And then when you push them to do a test that they should do willingly they get annoyed they get very annoyed and they're nurses get very annoyed with the patient.

What is going on with the medical system in the United States?

For me to go to the Mayo clinic I would have to have an approval from Blue Cross Blue shield and at this point I do not trust them anymore they do not have my well-being and safety in mind. All it is to them is cost cutting and if that means that I suffer or that I die from whatever is causing these symptoms will Blue Cross Blue shield just does not care in my opinion.

REPLY

@joannemm30809 There is a little rule which you might keep in mind when dealing with issues which would be genetic, and the doc says you have such and such…. "If you ain't got the gene(s), you ain't got the disease." And if the doc just does not know for certain, get one of the more responsible gene houses which will work with your insurance to do a FULL genome analysis on you. It is much less expensive that running to a bunch of med providers who do not help you. But use your own head. My Gelsolin has hit my ears, and I have had to have them trimmed back, but the surgeon says "…sunburn…". Remember the old song "Do your ears hang low; do they wobble to and fro; can you tie 'em in a knot; can you tie 'em in a bow….. " So I had one trimmed back last week, but with Gelsolin, it will probably be back just the way my tongue has and my lip and my eyelashes and jowls are. oldkarl

REPLY
@oldkarl

@joannemm30809 There is a little rule which you might keep in mind when dealing with issues which would be genetic, and the doc says you have such and such…. "If you ain't got the gene(s), you ain't got the disease." And if the doc just does not know for certain, get one of the more responsible gene houses which will work with your insurance to do a FULL genome analysis on you. It is much less expensive that running to a bunch of med providers who do not help you. But use your own head. My Gelsolin has hit my ears, and I have had to have them trimmed back, but the surgeon says "…sunburn…". Remember the old song "Do your ears hang low; do they wobble to and fro; can you tie 'em in a knot; can you tie 'em in a bow….. " So I had one trimmed back last week, but with Gelsolin, it will probably be back just the way my tongue has and my lip and my eyelashes and jowls are. oldkarl

Jump to this post

@joannemm30809 Hello!
I have been going through a lot like you have last 6 months. I fainted and fell and bowels emptied out in April this year. I still have episodes of flushing, near fainting and bowels empty out. I’ve had blood pressure issues, heart rate, difficulty walking, swallowing, many odd symptoms. So many blood tests, scans, etc. Many doctors and really darn frustrated that they tell me I have anxiety. I live in rural area so don’t have the specialists. I tried to get into Mayo but was denied since I’ve had so many tests. I have to wait til January to see endocrinologist. I’ve been left to figure it out on my own. Vitamins and healthy eating have helped. When I do start feeling good, then bam! I have a near fainting spell and bowel problem again. I’ve become a couch potato.
We must keep persevering. I write all my symptoms down and keep bugging my Doctors.
I hope you get some answers and post what you find out. We do not have anxiety!

REPLY

@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.

REPLY

@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.

REPLY
Please sign in or register to post a reply.
  Request Appointment