Skeptical PCP when I finally got an appointment for long Covid

Posted by bettyjackson @bettyjackson, Jul 28, 2022

2&1/2 years out from Covid and ever increasing Symptoms of typical loss smell/ taste, brain fog, fatigue, no appetite usually / weight loss, diminished endurance , balance compromised ,cognitive issues math & writing, difficult to stay focused on tasks and not sharp as I should be driving. The latest is the muscles on front of my shins and the top of my feet get rigid when I walk a lot on a day.
Took 2 months to get PCP appointment. I provided my outline of decline for her reference. She did order routine labs( all “unremarkable “). I requested a referral to a Neurologist and I was able to secure one , but visit is 3months out. A lot to be desired from the medical community at large to catch on,and catch up!

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Sorry to say this is typical with HMO insurances, PCPs are like gate keepers, unfortunately. You did great by advocating for yourself. Can be one or multiple issues. Was your tsh checked ? Also if its faster to get appt with a Physical Therapist at least to see if they can figure out what can be contributing to rigidity after prolong walking. If cant get to one, look into Hoka shoes and try these out, see if they make the difference with your lower legs sympyoms

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@lenchiksf

Sorry to say this is typical with HMO insurances, PCPs are like gate keepers, unfortunately. You did great by advocating for yourself. Can be one or multiple issues. Was your tsh checked ? Also if its faster to get appt with a Physical Therapist at least to see if they can figure out what can be contributing to rigidity after prolong walking. If cant get to one, look into Hoka shoes and try these out, see if they make the difference with your lower legs sympyoms

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I have Medicare and supplement insurance. Good plan.
My legs have the sensation that I am wearing snug leggings. I suggested to my physician an EMG maybe could be helpful. Have to wait for Neurologist however.

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@lenchiksf

Sorry to say this is typical with HMO insurances, PCPs are like gate keepers, unfortunately. You did great by advocating for yourself. Can be one or multiple issues. Was your tsh checked ? Also if its faster to get appt with a Physical Therapist at least to see if they can figure out what can be contributing to rigidity after prolong walking. If cant get to one, look into Hoka shoes and try these out, see if they make the difference with your lower legs sympyoms

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Ask PCP to refer you to multiple doctors since it just takes too long - ask for endocrinologist (ask for complete thyroid panel & antibodies, TSH not enough), rheumatologist, immunologist - hopefully you can get into at least one and start getting more tests. I have seen everyone for vaccine injury similar to long Covid - most test normal - but narrowing things down now because I still am not well. Also alternative functional medicine doctor can be really helpful and usually you can find someone right away.

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@lenchiksf

Sorry to say this is typical with HMO insurances, PCPs are like gate keepers, unfortunately. You did great by advocating for yourself. Can be one or multiple issues. Was your tsh checked ? Also if its faster to get appt with a Physical Therapist at least to see if they can figure out what can be contributing to rigidity after prolong walking. If cant get to one, look into Hoka shoes and try these out, see if they make the difference with your lower legs sympyoms

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Oops. I thought
PCP meant
Primary care provider.
I do not have HMO

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@bettyjackson, you might find this blog post from Dr. Vanichkachorn, medical director of Mayo Clinic's COVID Activity Rehabilitation Program.

- How to effectively talk to your local provider about long COVID https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/how-to-effectively-talk-to-your-local-provider-about-long-covid/

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I am only out of hospital since Oct 221. Working on 11 months out with long Covid. One week was better now it is worse again. Anxiety, unable to make decent decisions, brain fog, word loss, ugh. My oldest daughter gets angry with me. She thinks I ought to be perfectly fine now. Youngest daughter says I blame everything on long Covid. I go to PCP in a couple of days. For some reason my oldest daughter thinks she ought to go with me. I agree at first it was a good idea but now? Perhaps I am composing more than anything else. Now I am having a terrible bout of anxiety and fatigue. I hope there will be a stop to all this.

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I am a year out from having bad Covid. I have problems with brain fog and word loss. I also lost my sense of smell over a year ago. I fear this is my future.

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@bettyjackson

I have Medicare and supplement insurance. Good plan.
My legs have the sensation that I am wearing snug leggings. I suggested to my physician an EMG maybe could be helpful. Have to wait for Neurologist however.

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It sounds to me like you are retaining water, which is why your legs are so tight. Are they swollen? I would start eliminating gluten, dairy and soy. I have, due to Hashimoto’s and it has helped tremendously! good luck!

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So sorry to hear, long COVID is real and many odd symptoms. Hugs and praying. Have you tried Vitamin C and arganine...just a thought. I use it (doesn't hurt, don't know yet if helps).

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