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New to Dysautonomia sx..but the progression is rapid

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So I went to the ER for horrible "Gerd" like episode, and when I told the ER doc what was going on she said it sounds like autonomic issues. I basically have very poor GI motility at this time and they are scheduling and EGD scope and manometry to evaluate (will get back to this later). I followed up with my doc, who took bp sitting and standing, and said within normal parameters so doc did not think I needed any further evals through our Dysautonomia Clinic. Here's where is gets scary for me. I have been passed around specialist to specialist with no resolution (6 neuros, 2 gastros, ENT, pulmonary, sleep study, psychiatry). I am 35 years old female. An MRI approximately one year ago was "unremarkable".  I have been telling docs these issues seem "systemic" so there is only one thing that comes to mind unfortunately and it is the bad thing:

Over the past several years the following issues have arisen  (yes this is going to be a book, I"m sorry)

-Poor mastication of food, pocketing food when chewing, sometimes food falls out of mouth, biting inside of cheeks when I eat from time to time, sometimes food coats the back of my throat  and sticks when I eat (especially things like fine ground beef, crackers, etc). I have to "double swallow" water.  A barium swallow showed normal functioning BUT this did not show my actual mastication and chewing- that I need a VFSS for and have yet to be referred. This issue seems to be starting at the "chewing" level. Now my  whole stomach/gut is out of whack.

-Poor fine motor skills- my typing skills have become horrible- its like my fingers have no control over the key board. Reversing letters when typing. I feel like I have become "dyslexic" because words on the page seem jumbled and they move around a lot when I read.

-I continue to drop things excessively- usually small things, or light articles of clothing. Heavy things not an issue at this time

-Proprioception is off. I seem to favor "veering" to the left when I walk. I walk into door jambs, sides of bookcases, etc.  My husband has commented many years ago that I don't walk in a straight line and he almost walked into a ditch. Cerebellar right?  My depth perception is off as well.

So I have had "episodes" of gastroparesis on and off since 2014.   Usually once a year, sometimes associated with illness or if I eat food that is too fibrous like raw veggies or broccoli.  At this point its at its helm. I can eat no more than two or three bites of food without feeling full. I also have no appetite any more. Vomit burps. I burp with every bite or drink. On PPI and Prevacid with no relief.

-Overactive bladder with incomplete emptying. This was "chalked up" to the fact I had a traumatic forceps delivery. I pee very little- get off toilet, immediately have to urinate again, hard time initiating the stream.  2 a.m. episodes of not making it to bathroom on time. Bowel urgency as well. 1 episode of well..a mess.  I never get the feeling of "needing" to eliminate.

-When getting up from laying down there have been 2 instances I have been so dizzy I had to "fall into the wall" to gain balance. I don't feel the need to pass out thank goodness, but do have dizzy spells when I stand for too long. I have taken my BP many times before with little change between different postures. Of note, my BP is usually 90/59 when laying down.  Sitting down my heart rate has gone as high as 150!

-Off balance when putting one shoe on and the other is off, standing on one foot. Heel to toe (tandem walking) is shaky, bending over, frog position

-Several drooling episodes awake and asleep (started during pregnancy in 2018)

-Vision dimming from time to time, double vision, blurry vision

-Difficulty initiating a swallow.  My throat is very dry at times, which I contribute to not enough involuntary swallowing because saliva seems to be "pooling" behind my lip. I have to spit often to relieve myself of this.

-Constant taste of blood in mouth but no blood when I spit. Sometimes vomitus taste.

-Hoarse voice often, several instances of voice box just not working  during conversation, or my voice cracks when talking. I am constantly clearing my throat. Especially in the AM

-Lack of sweat for the past 5  years. The only places I sweat are palms, feet, under my arms and back of my thighs. It is excessive on hot days.  My shoes reek so bad this was never an issue until recently.

-Hearing going in and out, misunderstanding what I hear

-Right hand frequently cold including the thumb and three fingers.

-Frequent "sighing" episodes or going "hmmph" that have gained attention from coworkers and husband. When I talk I have to stop and gasp for air. Sometimes I feel this need for a huge inspiration breath.

-Sleep apnea since 2014. Several episodes of laughing in my sleep.

-One morning I woke up and had a "death rattle" type noise coming from throat, scared the heck outta me, almost like an involuntary gasp.

-Brain fog- poor verbal memory, word finding, verbal learning was below average on neuropsych ( I am a masters level educated), visuospatial below average and my abstract thinking was very below expectation for my education level.  I mix up words, use neologisms, word salad, reversing letters. Poor grammar.

-Hallucinations several times auditory and visual (not scary or distressing, amusing actually), and"misperceptions" of misperceiving objects (example- mistook a mailbox for a little boy)

-Neck pain

- Episodes of "electric shock'' pain, burning feet,  cramping hands, water pooling over arm, and tingling face all in a 4 week period but has subsided and never returned. There was also an incident of a numb patch on my finger that subsided after a month. My dr was perplexed.

I don't know what to think except all of this seems to share a lot of similarities with MSA. What scares me is the swallowing/speech, involuntary sighing and ataxia/fine motor type issues. But sometimes, it feels there is a "wax/wane" to some things.

 I know you fine people are not medical professionals, but I have had these issues several years and just frustrated and freaking out. I am being passed off as a "psych case" at this time because the Dr's just keep saying my MRI is normal, nothing to worry about..

So I sit here, miserable, yes I can work and do things but I feel like I am waiting for the "dam to break" so to speak. I just don't know what to think.

Now here is where it gets interesting- my dad has overactive bladder and issues with his male parts functioning. He is in his later 60s and only diagnosed within the last five years. He too has poor verbal, word finding issues. This is striking to me.

My dad's sister and her daughter (my aunt and cousin) were both afflicted with some type of early onset "MS" in childhood. However, they NEVER got medical help for it, except seeing medical specialists in the 1950s and 1980s. They both basically crippled up in a chair. My cousin aspirated at the age of 50 but always believe she had "Lyme Disease". She spent years seeing "Lyme Literate" doctors with no improvement. We saw a vibrant woman slowly deteriorate before our eyes.  My aunt, her mother, died of breast cancer at 62. Both of them were unable to walk by their mid-40s, and ended up with contractures of their hands, limbs and both had the hanging neck. By death their speech was unintelligible.  I hear it is quite rare for MS to be genetic. It's usually environmental. At one point the local MS Society came to see about them and even commented they don't present like MS typically does.  I did some research that MSA could have  genetic component. There are a few familial cases. I think maybe a mitochondrial connection of a SCNA mutation?  Maybe it's something to look into? But the weird thing is my grandmother and grandfather (aunts mom and dad/cousins grandparents) lived into their 80s and 90s.  Unless its a gene penetrance type thing?  I don't know. Too many weird things going on with nobody invested in connecting the dots. It's a mess.  I hope someone can offer some guidance if I'm on the right track  or in the least reassurance (  :( ).

Thank you all

Miss P

Edited by Hopeful83
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Hi Hopeful83 -

Your symptoms sounds so frustrating. Not having the right medical help has to feel lonely and scary. When reading your symptoms, a few things came to mind.

1) Do you live or spend time in any place with mold or musty odors? Brain fog and balance issues, along with the taste of blood (metallic taste?) can often go along with mold exposure. (Potentially pesticide exposure as well.)

2) The specialists you're seeing don't seem to be able to connect the dots with all of your symptoms. Do you have access to an integrative or functional medicine doctor who could evaluate your case with your whole body in mind?

3) Have you heard of or looked into intestinal permeability or "leaky gut" ? 

4) Did any event or trauma precipitate these symptoms?

You have my compassion and my sympathy for what you are going through. It is a rough journey to find answers, but it sounds like you are thinking through the symptoms and pursuing ways to get treatment!


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Thank you for the reply. 

) Do you live or spend time in any place with mold or musty odors? Brain fog and balance issues, along with the taste of blood (metallic taste?) can often go along with mold exposure. (Potentially pesticide exposure as well.)  *Actually this is something I did think about looking into- we renovated a house some years ago and had a fire and hung new drywall. Sometimes there is a little mold that comes in from the crawlspace...BUT I have had gastroparesis sx and anhidrosis (lack of sweating) since before we moved there. Also the veering off when I walk seems to be before the fire.  I do notice my kids sometimes have word finding issues but maybe just part of being a kid?

2)   *Are these functional/integrative medicine doctors affiliated with university/tertiary hospitals?

3) Have you heard of or looked into intestinal permeability or "leaky gut" ? *Never heard of it

4) Did any event or trauma precipitate these symptoms?  *No trauma. Anxiety all my life,  a traumatic delivery with my daughter, but the gastroparesis happened on and off way before the pregnancy. And the lack of being sweaty really seems to be something I've had most, if not all of my adult life the past 5-10 years or so.

I just see so many similarities of MSA in what I have going on.



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When first starting out is common to feel confused, scared, and feel worried about worse.  A lot of the symptoms you describe seem typical for POTS or other forms of dysautonomia and don't necessarily mean you have MSA. I don't know much about MSA but it is not nearly as common and more severe.  If you can work and do things - that puts you in much better shape than many people with POTS.  I would encourage you to stay active and not worry about getting worse.  Most people don't get worse - they usually improve over time and improve further the right treatment.  To ease your mind it might make sense to get an appointment with a dysautonmia specialist (there are doctors listed on the site) who can perform tests and advise you if you have MSA.

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It sounds like you've had a number of symptoms for a long time. It's always a good idea to get any mold checked out as that can make your underlying symptoms worse.

It depends on where you live, but the Cleveland Clinic has both integrative and functional medicine departments, for example. Seeing a dysautonomia specialist may also give you some peace of mind.

I agree with yogini that most people do improve with the right treatment, and I hope you can get some answers from a good doctor in your area!

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  • 2 weeks later...

Hello, just an update- I have met with gastroenterology and they did a scope. They found that the water I drank 12 HOURS before my Endoscopy was still in my stomach- they found a large amount of liquids. Strangely, the food I ate AFTER drinking the water was not in my stomach (weird). The Gastro strongly feels I do have gastroparesis. I have some esophagitis, likely from the irritation of food sitting in my stomach and the acid splashing up.  So, I am off to a stomach emptying June 4th. I also have a weakened tongue base after doing a modified barium swallow and have to see ENT.  My vocal cords have some kind of dysfunction, as my pitch and range changes during simple conversations. It will crack or "go out", or I end up with a breathy voice.

 So, that is what is going on now.  I continue to have episodes of fast heart rate just as I am falling asleep and also being woken up in middle of the night (sometimes going up to 150bpm), so I am buying a Polar A370 tracker that has 24 hour HR monitoring.   :( 

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