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Anyone else told their medical system has no neuro willing to treat?
Post-COVID Recovery & COVID-19 | Last Active: Jun 22, 2023 | Replies (34)Comment receiving replies
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.
Replies to "Hi All, I appreciate y’all sharing. I have a feeling I will find the same issues..."
I also suffered from the same internal tingling and vibrations, primarily at night, which seemed to be related to the chronic and widespread pain I had developed from long Covid, as the tingling and vibrating sensations always seemed to be focused in the areas where I was experiencing pain.
It was a rheumatologist I saw (the second one) who finally diagnosed me with long Covid, and he put me on a three-week course of prednisone. That, along with following a strict, low-inflammatory diet is what seems to have fixed me.
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 😇
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Wow that sounds terrible. I see an amazing nurse practitioner in a long covid program. I did finally get into a neurologist, self pay and I am referred for a neuropsych eval, all have been coordinated through the program. As for the neurological symptoms, there are many other conditions that cause really unusual neurological symptoms. I see patients in rehab who describe all sorts of things and go to specialty clinics all over the country, with insurance paying for treatments that are very expensive and they have no idea whether it's going to work or not. Some get better and some do not. Somehow adding long covid precludes us from the same extensive testing and treatment. I would definitely see a neurologist to rule out anything else. All of my testing was basically normal, and covered by insurance. I found other general practitioners wanting to help but have no knowledge, so maybe you could find a long covid specialist online? And then see specialist if you have a specific need such as cardiologist...
Wishing you all the best