Anyone Found Help/Explanation for Long Covid Neurological Symptoms?

Hi @dawnmw and others in group. I was not hospitalized but ER doctors and PCP basically told me same thing. Feel my past experience running multi physician specialty practices over 20 yrs., need to share perspective and please dont give up and use helpful info from this site to find healing info specific to you. -Took pick of my lower legs and feet yesterday to prove year later still issue. Also had rare 1 inch round inverted bumps throughout my body which even caused difficulties breathing on neck, could not get appt for months when nothing present and told call for appt when reappear? Still laying in bed typing this after taking almost 3 hrs meditating/breathing exercises due to nightly covid created apnea episodes of over 20 hr. /O2 in 80’s, finally verified by sleep study thru post covid doctor year later ( only one visit allowed with them in my healthcare system) , yet still cant get physical assistance ordering/transportation to obtain respiratory therapist supported oCPAP(most insurances do not cover even with dme benefit), months later. Yes even used professional sources thru social work/local county and state to no avail. Worse, yesterday after over year no ability to work/no income creating no heat in house with high 55 for over a month that Pcp states need to get heat for exacerbating symptoms?, Social Security Disability/Health Human Serv rep stated I could just complete paperwork in remainder of 24 day period allowed-week to receive it, week to try to fill out few lines, few days to be well enough again to make call requiring oxygen to prevent crash after, to be told family member/friend etc can assist in remaining few days and not the over phone completion promised by local office months prior? ☹️, No notes available/read by rep ? And the sad audacity to assume everyone has help, is lessen every person in capacity to be making these life affecting decisions should have at home in person experience with the disabled ,or heaven forbid, have gone thru something like this themselves as so many on these support sites have no help. This journey has proven to me how broken healthcare is, needs pivot to truly enable appts at time of symptom/issue with providers who are given/required/verified training of debilitating symptom info as we are all sharing the truth of things previously perceived doubtful. Yes, took couple of hours to type this and I will pay dearly but our stories need to be heard to hopefully help all! Healing journeys to all🌈

My husband had lots of confusion and processing of information. Since he has been drinking Lion’s Mane tea, Mudwater and taking the Lion’s Mane mushroom drops 4-5x’s a day, he has been a lot more alert and active. When he skips a dose he gets confused again.

Might be helpful if you state where you are from as post-covid treatment clinics are opening up.

We are from NW Florida

We tried Lion's Mane and did not see any positive results but keep on taking it just in case it was doing something good. Then my wife started getting headaches, it took us a few days to think about the Lion's Mane. So, she stopped taking Lion's Mane and after 2 or 3 days her headaches went away. I wish it would have helped, but in her case, it did not. I wish the best for you.

I just recently learned about Neurofeedback. It has been around for a while and is known to treat ADHD and anxiety. It monitors your brain for brainwave activity and almost immediately provides feedback, often through visual or audio cues. It's basically like watching TV or a video game, while wearing a few electrodes on your head. It can now be used to treat all kinds of neurologic issues and specifically for long covid. I just went to my first session yesterday, and slept like a baby last night! The therapist told me after reading my brainwaves afterward that I may need only 4-5 sessions and should see a dramatic difference. I suffer from fatigue, brain fog, POTS, and developed autoimmune dysfunction from LC. It is worth a shot. It is noninvasive, quick, and insurance even pays for it! Best of luck to you!

DHA and Methyl Folate seems to help me.

UF has a Post Covid Recovery Group. Their offices are in Gainesville. I got accepted into the group by phone 8 months ago. However, my appointment wasn’t until Thursday, May 4. The doctor and staff were wonderful. As she said she is available for consult only. She faxed her recommendations for further referrals and testing to my primary care doc locally. I live on the east coast of Fl, so it was a 3 1/2 hour trip for us. But, the doctor did spend a full 1/2 hour with me.

Have you seen a neurologist? The weakness and numbness in your legs could be motor nerve damage. The red feet could be due to small fiber peripheral neuropathy, which many neurologists outside of major academic medical centers have trouble diagnosing.

Thank you, this is something I have thought about, going to a neurologist, But wasn't sure what can be done to help repair, or at least maintain and hopefully not get any worse..