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

I have also developed these tingling graduating to internal tremors and actual shaking, starts in early hours, comes in waves, and wakes me and now accompanied by overall body weakness and like a neurological storm that affects body and brain. It’s causing debilitation and torment including emotional. NOTHING I’ve experienced in my life vaguely resembles.

Been to my Dr, the ER, clear CT scan, and one zoom visit to neurologist this week who has ordered MRI in 3 weeks and put me on a trial of anti seizure meds, momentarily it helped the physical but everything is back and escalating and I’m unable to cope.
This was a relatively sudden onset.

If I can’t find relief I simply can’t function in this body.
I am 68 and had a good and happy life before this. As of now my life as I knew it is gone.
Does anyone think that Mayo could help?

Forget Mayo….Find a FUNCTIONAL Nuerologist to help you and possibly a Holistic or Functional Nutritionist. I am using both and healing so much. It is ALL out of pocket expense but worth every penny. Look up Brain and Spine-Dr Harrison Salisbury in West Jordan, Utah. He is on Instagram and YouTube…you can contact his office for a free zoom call…and he can help you find someone in your area or fly to him! Go look at his work! You just need some brain help with lasers and gut help with the right diet and supplements.

Hi @lisadunlap. Please dont give up. As you are able to read more posts and glean helpful insight and resources, you will realize there are things improving. I am 60, little over year post covid, and gratefully not as bad as last year which you seem to be experiencing as so many of us. It seems “true” rest and care for our bodies needed whether few months or years depending on our individual bodies. Just as this year seemed impossible at the beginning, I am able to maneuver now and know I can make it thru the next year to reap the benefit of spending another 40 years with loved ones💖 Hope this helped and healing to everyone 🌈

Everyone on this thread…I had muscle spasms, tremors, fatigue and many other symptoms. I AM HEALING BUT it’s all out of pocket expense so go sell some belongings if you need to and go find the following people to help…FUNCTIONAL Nuerologist NOT a regular Nuerologist!
FUNCTIONAL or Holistic Nutritionist to heal gut and brain health. I am on a strict diet specific to ME…you have to do testing to find out what’s wrong with you b/c you have long Covid b/c you had underlying unresolved issues before you got Covid! My functional docs have done exstensive stool, saliva, hair, blood & genetic testing on me. I also do hyperbaric oxygen chamber and infared sauna. Go in Instagram or YouTube and look up the work of Brain & Spine-Dr. Harrison Salisbury (office located in West Jordan, Utah) He is amazing and will do a free 15 minute call with you and also will treat you over ZOOM or help you find a Functional Nuerologist in your area!

Thank you so much for replying. I can't believe your state only has one clinic taking pts this year but maybe my state FL is the same. What's also crazy is that doctors are not willing to investigate to rule out other diagnosis. It's like we are medical outcasts. This makes me think we really need to organize. There are so many of us, our voices need to be heard. Thank you again for replying.

again these are my symptoms too, they say there are about 200 different long covid symptoms, i have 30 different ones, i know that sounds crazy or like i'm making it up, it is for real. be for i had covid, i was great, felt great, my bones where fine, now my last bone scan showed bone deterioration, even my doctor was surprised and yes i ache, hips, all my joints, and even my teeth are changing, there are way too many things to list, what the heck is this stinking virus!!!! it's been over 3 yrs for me..hang in there!!

Check out the Thailand medical news, they have some real good articles about how this virus works,researchers are calling this airborne hiv every symptom I have is like a immune system disease I don't think I will ever recover.

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.