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

Hi inmetta. Thank you so much for publicly sharing this very common situation that I have professionally and personally experienced with many different major healthcare systems. Many will state “they are unable to further treat or refer for associated diagnostic services due to limited resources or state your PCP is unable to continue your physician/patient relationship with no explanation or follow up/inquiry possible. As you so correctly pointed out, assuming covid is cause denying treatment options does not allow for healing treatment or ruling out so many other possible medical causes that need to be addressed. Hopefully more of us publicly bringing light to this will help healthcare system directors to address/change this detrimental healthcare practice. Healing journeys to all🌈

Thank you for sharing your struggle. I don't know if it is ok to forward this link? I have personally dealt with insurance not wanting to pay as there is no cure. https://www.nbcnews.com/health/health-news/long-covid-symptoms-treatment-insurance-coverage-rcna72012

I have an appointment at the only Long Covid clinic in my state that has appointments this year. I have to pay for out of pocket, despite my Tufts health insurance.

I agree with post above that hopefully this will help the healthcare system to address/ change and HELP the people who need it the most.

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.

I am in Massachusetts which has many world renowned hospitals in Boston. It is hard to fathom that Long Covid clinics are full. My friend's mom worked in my doctor's office for many years. She said insurance companies don't want to pay for all this testing when there is no cure or too many tests don't look good for a doctor. I don't know how true this is.
I have never been involved in politics or felt strongly about something to contact my elected officials; (please no judgment). I am going to write a letter to my congressman (I played basketball with his son 27 years ago). I am going to ask my congressman to not forget about Long Covid sufferers. We need help, we need to not be shunned by our doctors or forced to pay for treatments when we have health insurance. I had not missed a day of work since 2015 due to sickness.

I was told two days ago by a neurologist that he could not help me. I am suffering from pain or burning all over since the Covid we do need to ban together and do something because there are so many of us going through the same thing some doctors even want to give you medicine just to push something on you and some are even thinking that you’re going through a mental state we need help

When I had my intake at the long covid clinic at Mt. Sinai in NYC, I reported that I had a slight tremor in my hands for years (I'm 73) that post covid it had become so pronounced that I could no longer put in my contacts. The PA doing the intake said something along the lines of, "Covid seems to find our body's most vulnerable spots and makes them worse". Like others on this site, I had "marginal" blood pressure for years, that spiked post covid (along with my heart rate). My cardiologist said this is something they're seeing with many long covid patients, prescribing meds to deal with it. I'm not sure why any neurologist would refuse to see a long covid patient, at least to rule out any other issues and/or to help with managing symptoms. I have a neurology appointment later this month, and, while I doubt they can help with my brain fog, I'm hoping they might help with the hand tremors.

Thank you for sharing, I 've also heard this. Sounds like you are in good hands. Yes the symptoms I was referred for were for visual processing difficulties that are common with people after stroke plus headaches so of course the first thing any doctor should do is rule out CVA, brain tumor etc both of which run in my family. Yet I was flatly discriminated against ( in my opinion) because I have a hx of long covid. And neuros here have a 6 months waiting list.
I have a great nurse practitioner, so we'll work on a plan. Best of luck with your appt!

Wow! That's terrible! I'm so sorry! I hope you get help soon. They made an appt for me but it's not until September. Is there a shortage of neurologists, too, like so many other professionals? Or are people scared to try to treat long COVID? Crazy!!

My husband has been told by the neurologist that he saw this past month and who had him do an EEG that she recommends he seek a different neurologist and get a different opinion - from our interpretation, so she can move on and not have to deal with this. She also recommended handing him off to psych which he has already been to and all they wish to do push meds - he has been asked by the psychiatrist what he thinks he has and then asked what meds he would like to be prescribed. His follow up appt with psych previously was all of 8 minutes and primarily consisted of him being asked again what meds he would like prescribed. Our healthcare system is broken.

So sorry to hear that, how awful. I'm hearing this same story more and more. Thank you for sharing.