“Nant ” You posted in July that, “I seem to be educating my doctors and therapists.” My exact sentiments. Many( or maybe even most) doctors are long hauler phobic. They have too much on their plate to even try to deal with an entirely “new” medical field. Enter Omicron....and we are further back on the burner. It’s the reality of the situation and requires that we forge ahead with a very proactive approach to our own situation. There is quite an impressive amount of research going on but most Drs aren’t knowledgeable regarding same. And they don’t have time! Examples: In order for me to know whether or not there were any indications in my blood work for the reasons why I have severe muscle pain and extreme weakness and tingling and numbness, and eliminate anything as a “cause” I went to my GP. I see her once a year for annual physical. In hand I had a printout of the CDC recommended list of blood tests for long haulers. This dr was so relieved that I did the leg work that she readily wrote the orders. I did have to educate her regarding the fact that people with an MTHFR gene mutation should have their homocysteine checked since there is an implication of a connection to Covid complications. All five vials came back impressively within range. After all...I’m one of those who 14 months ago was totally healthy, exercised intensely 7 days a week, ate five servings of vegetables and fruits a day. And long haulers’ tests often come back normal. The irony of it all.
Example: I had an EMG done by another unknowledgeable-of-long-hauler dilemmas-dr, who while sticking the needles in my feet, legs, and back comments under his breath to the tech assisting him, “I wish we knew what we were looking for.” EMG came back normal. The autonomic part of the test has yet to be rescheduled since the machine has been broken for the past month and they have yet to reschedule me. Cleveland Clinic for all of the above.
Example: I originally was almost excited that I could move on to another big name, Mayo Clinic, by clicking on the blue box and getting an appointment. I waited my turn in the phone line that was a matter of two days of waiting for the scheduled called. I was greeted by the nice Mayo info taker, answered all the name, address, and insurance questions, put on hold while she checked availability of appointment and was then told the first available appointment was in a year. Yep, reality. The long hauler line is long...and the answers few and far between. I am impressed that you got in a long hauler clinic. The clinics across the country are booked. I hope they help you. Meanwhile for those of us who are not clinic lucky, we must Google our symptoms and locate doctors.
There is marvelous research out of Northwestern U indicating that Drs should be ordering MRIs and ultrasounds to locate nerve damage. I’m printing out the research and about to start locating a neurologist who will place the orders. Sounds simple enough, right? Not if they have a one-size-fits-all mindset...and are long hauler phobic. All we are asking is for “a little respect” regarding what we know from having too much time to discover what the doctors need to find the time to pay attention to.
As for the Mayo mentors....Gd bless your efforts. Thanks for letting us all gather on common ground. You might want to offer your links to the doctors on staff....just in case. And fellow long haulers....keep Googling and gathering info.
And pay no mind to the blue Mayo box...it will give you false hope until next year. Just sayin...in case someone hears.