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Treatment options for Dysautonomia
Autoimmune Diseases | Last Active: Oct 3, 2022 | Replies (47)Comment receiving replies
I was diagnosed in April of 2020. I started having very strange and dehabilitating episodes in December 2019 after my husband and I caught what the doctors were labeling a unknown respiratory virus, but we believe it that time it was covid-19. We had all the symptoms of it.
Since then I've had debilitating symptoms from visual disturbances to pins and needles throughout my body to muscle twitching to racing pounding heart to numbness, and an overall sensory from head to toe shut down in short circuiting of my entire body.
The episodes I suffer with started out as once per week episodes yet now seem to occur on a daily basis. These episodes have no trigger that I can figure out either.
I've had every test done you can think of yet all come back normal. I've seen several cardiologist (who diagnosed me with Dysautonomia) and several neurologist, endocrinologist and gastrologist etc yet none of them can pinpoint another disease, virus etc.
All tests come back normal YET I feel SOOOO SICK inside. It's horrible.
What I dislike the most is these sensory shift feelings I get, where my sensory my feeling of spatial where I'm at it's like a sensory overload from head to toe changes and I feel so uncomfortable I just can't explain it but it's like a full body sensory malfunction along with the racing heart and the visual disturbances and the bowel issues where I have to go to the bathroom right away and the pins and needles in my extremities and the numbness.
It's awful so all these doctors have now referred me to the Mayo clinic in Jacksonville and they have me on an over 1 year wait list to be seen. This is an absolute nightmare.
And what makes absolutely no sense when I ask all these specialist doctors will you say I have dysautonomia yet I do not fit into the any of the 15 categories that fall under this disease.
There are 15 categories for dysautonomia yet I do not fit into any of them. No one can answer then what type of dysautonomia I have if I do not fit into the 15 categories that every single medical site list?
Replies to "I was diagnosed in April of 2020. I started having very strange and dehabilitating episodes in..."
@joannemm30809 i can only imagine how difficult it must be for you. It’s like you’re stuck between a rock and a hard place. Please don’t give up, you will find help! Becky
Have you tried any of the Mayo care clinic hospitals? There are 3 in Florida https://mayoclinic.org/about-mayo-clinic/care-network/members
You might also try googling “medical centers of excellence’
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Joanne, golly, your life is hugely disrupted by all of these unexplained symptoms and it’s understandable to be so frustrated after countless visits to specialists and still no answers. I’m sorry you’re having to go through all of this…I can’t even imagine. And sadly, yes, because there are millions of people annually trying to get into Mayo Clinic and only so many slots open, the demand is out reaching the availability of appointments. You’re not being dismissed so don’t lose hope. Keep trying because there are always cancellations and schedule changes.
But you just said sometime in your first paragraph that caught my eye. About possibly having Covid late Dec 2019.
Were you ever tested to see if you have Covid 19 Antibodies?
With the timing on all of these symptoms you could possibly be a Covid Longhauler. A lot of your symptoms have been presented by members who’ve had Covid and are suffering unexplained illnesses such as neuropathy, lung issues, cardiac, optic issues, etc.
Here’s a link to the group if you’ve not already visited. If you’ve already done so, then I apologize for missing that in your earlier discussions. It might be worth exploring and getting tested for covid antibodies. There are post-covid recovery clinics for Long haulers. Just a thought.
https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/