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Anyone else told their medical system has no neuro willing to treat?

Posted by inmetta @inmetta, Mar 31, 2023

After months of waiting for my neurology eval, referred by the post covid clinic, I was told the neurologist would not see anyone with a history of Long haul covid, nor would any neurologist within the large practice. I stated my issues were headaches, cognitive issues and visual disturbances and wanted to rule out any other possibilities. And I was told flatly, and rather unkindly, no. I'm totally at a loss. Hopefully the folks at Mayo will call back, so I can make an appointment there.

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felicia2 | @felicia2 | Jun 21, 2023
In reply to @jessicajthompson "Hi All, I appreciate y’all sharing. I have a feeling I will find the same issues..." + (show)
@jessicajthompson

Hi All,
I appreciate y’all sharing. I have a feeling I will find the same issues in my medical care system. I am experiencing a symptom - but this is the first time I have had it isolated, on its own. From what I have been reading it - internal vibrations all over my body… the feelings of shivering but not shivering, tingling and pain like a limb that has fallen asleep but is regaining circulation.

It is distracting. It wakes me up multiple times a night. I cannot focus.

So it seems if this doesn’t resolve I will have to seek a neurologist, which are really hard to get appointments with and may cost $$$. But I have also been reading that Drs don’t know what is causing this… so do I spend the time going and getting expensive tests at this point? Or do I wait a year or so to wait for researchers to come up with a solution? Has anyone found a resolution or a way to reduce this?
Also, is anyone here working specifically with a Long-Covid team? There isn’t one in my area and just wondering if there is hope when working with a team instead of fumbling through different drs offices after begging their primary care Dr to refer them… and then waiting months to get in?

I’m so exhausted and defeated with all of this. I am lucky to have a good job with a pre-Covid history of health and strong work ethic, job protection through FMLA, and a support network of family and friends. I have missed so much work the past 1.5 years I am worried. I had a pre-Covid active lifestyle and now I can only intermittently be active… gaining 25lbs in a year.
But beyond that I am worried about the medical bills that are not covered by heath insurance.
I can’t imagine people having to go through this without all of those support elements.

Thank you all for being an understanding community. I wish everyone improvement and a kind and compassionate community.

Jump to this post

Thanks for sharing! I have similar all over pain and exhaustion ever since my 2nd Modena vaccine 2 years ago!
My Palo Alto doc says no cure/ meds for Neuropathy!!
ApCodein helps a bit but makes me dizzy and so tired!
Anyone have good results for joint pain with Hudrochloroquine? Which is mentioned on Mayo sites often!?!
Meds Help anyone?? Thanks 😇

REPLY
1 reply
buzzbuzz | @buzzbuzz | Jun 22, 2023

Got same response from rheumatologist but went in anyway because I hadn’t had a positive covid test in my file. I was really surprised to see that. Sarah Yang Neurologist in Broomfield Colorado diagnosed me with CFS which may or may not be long COVID. Maybe you could try her office to find local neurologists to diagnose you? I am really at a loss on how to find doctors, so this is a wild guess…

REPLY
1 reply
buzzbuzz | @buzzbuzz | Jun 22, 2023
In reply to @felicia2 "Thanks for sharing! I have similar all over pain and exhaustion ever since my 2nd Modena..." + (show)
@felicia2

Thanks for sharing! I have similar all over pain and exhaustion ever since my 2nd Modena vaccine 2 years ago!
My Palo Alto doc says no cure/ meds for Neuropathy!!
ApCodein helps a bit but makes me dizzy and so tired!
Anyone have good results for joint pain with Hudrochloroquine? Which is mentioned on Mayo sites often!?!
Meds Help anyone?? Thanks 😇

Jump to this post

I have found joint pain comes and goes (wrists and ankles and used to be elbows for me) with restricted diet (now on Leo Galland’s MASC diet, see histamine diet and long covid in his 52 page word doc on website for treating long covid). I am much much better on this diet across the board, and have gained stamina (had PEM). I think I added a supplement from his suggestions that aggravated my wrist pain recently (so now back to adding them three at a time to speed the process), and still have brain fog, but getting better.

REPLY
inmetta | @inmetta | Jun 22, 2023
In reply to @buzzbuzz "Got same response from rheumatologist but went in anyway because I hadn’t had a positive covid..." + (show)
@buzzbuzz

Got same response from rheumatologist but went in anyway because I hadn’t had a positive covid test in my file. I was really surprised to see that. Sarah Yang Neurologist in Broomfield Colorado diagnosed me with CFS which may or may not be long COVID. Maybe you could try her office to find local neurologists to diagnose you? I am really at a loss on how to find doctors, so this is a wild guess…

Jump to this post

Thank you. I found one locally who has agreed to treat me for my headaches. And I have an evaluation set up next fall for a Neuro to consult on cognition which is really my biggest issue. I'll have to travel for that one but I don't mind, grateful for the opportunity

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