Finally: Diagnosis. Oddly: symptoms have come in stages. Others?

Hi @jimthescientist. Cant thank you enough for sharing your healing journey methods and your dark humor more invaluable than words can say!! 🌈

I am a retired Kaiser Cardiologist whose first LC symptom was AFlutter requiring Cardioversion. That was March 2020 so not thought related to LC. Long Covid worsened with multiple bouts of Covid and much worse after spinal surgery to treat my ( probably LC related ) back and leg pain. I will be in Boulder CO this summer if you have any suggestions of MDs within or outside of KP, I would love to try to find someone who will listen.
Thanks,
Gerry

I am a retired research scientist (not medicine). I don't know if we can post recommendations here; if not them just PM me. My CV symptoms went away within 8 months and I haven't been back, but my cardiologist was Adam S Betkowski, MD at KP. He was knowledgeable, a good listener and seemed to be more like a research doctor than most. He was also interested in my overall and covid-related health.

Symptoms coming in waves/changing is extremely frustrating. My LC started in Oct 2023 with food aversion, gastrointestinal issues, feeling extremely cold & shaking, but the shaking wasn’t related to temperature. Some of the symptoms that have come up since the beginning include brain fog, cognitive difficulties that I call decision paralysis because I struggle with making decisions. I can no longer handle emotional or mental stress. Autonomic dysregulation, PEM, body aches, racing heart rate, coat hanger pain along my neck & shoulders, and anxiety and depression. I’ve also been diagnosed with fibromyalgia & POTS (although I cannot find anyone who will do the tilt table test.

I’m still struggling to find appropriate medical care. I believe I’ve developed diabetes as well due to A1C being 9%. This was through a biometrics test at work & although I mentioned it and my concern to my rheumatologist, PCP, and Infectious Disease doctor’s nurse, they all seem to think Simone else should deal with it.

I struggle between giving up and continuing to advocate for myself on a regular basis. Feeling disbelieved is exhausting.

Hi @mayfl0wer. I am so sorry you are experiencing the difficulties so many here face. May I suggest you contact your healthcare systems patient advocate thru your pcps referral. That advocate in turn can hopefully do all the work needed to obtain an enhanced care manager to have diabetes thoroughly evaluated with requesting hopeful further care of trauma level mental health provider, neuro physical therapist etc. for your realistic daily needs etc due to the complexities of your post covid🤞Know how daunting all this is and we are here to help you maneuver for the quickest healing journey possible🌈

Having a patient advocate makes all the difference. I am fortunate - when my PCP of 25 years, a doctor I truly loved for the care, the contacts, advocacy, the practice was sold. I tried the new doctors who were not great. When I got COVID in late March 2023, and then the beginning of what I now know was Long COVID, none in the practice had even looked into it. At all. It was a bad fit. The good news: the office manager for my doc tried too to work with the new practice and too found them not a good fit and opened her own patient advocacy practice. She'd been w/ the doctor (who practiced solely) for 30 years, knew EVERY specialist in town and the hospitals and had good relationships with them. When she told me what she was doing, my spouse and I signed on immediately. (She charges by the hour.) WHAT a difference. I'd not have gotten the appointments I desperately needed if not for her. (She's in the Maryland suburbs of DC; I'm in DC; my now retired PCP was also in DC.) She keeps records of all the appointments, the test results, and when I can't get someone to return a call, she's on it. She has gone with me to appointments to take notes and bec she knows my med history even better than I do (she's younger than I and has an amazing memory!) and knows medicine to ask better questions. If you can find someone like that, YES. I'd have given up far more than I have a long time ago without her support.

JE

I so understand! You have no idea - and I hope you'll read my response to law59's response to you.

I too have felt horribly cold most of the time - and shaking from it. Gastro issues have just begun and they are awful. It will mean yet another doctor I'm sure. I'm so tired of it all. And without my Care Coordinator (see post noted) I absolutely couldn't do this. JUST being on hold to make an appt. and explain is exhausting, isn't it?

I am 'pleased' that my initial post has generated so much discussion. I feel horrible for us all AND am glad "it's not just me".

This is one horrible journey and it will make me retire from work I love too soon. I'm almost 78 and self-employed and had no plans to stop working until I died. Alas no longer can I do so. Even getting dressed well enough to be on Zoom takes too much energy and time. I've thought about wearing hats so I don't have to get haircuts which takes even more energy. I laugh as I write this - it's what a friend and I call our "organ recitals" - and I know how not funny it is.

To us all and to Mayo, thanks for this place to compare and gain comfort from others - get ideas to recommend to our doctors - even if we are told that probl won't work on "my" symptoms.

I long for one night of sleep in a bed instead of a non-recliner chair and one day - just one to not be greedy - of not having the old symptoms flare up and new ones appear.

In this season for many of renewal, may the doctors and scientists doing research continue to do so and help us. Enough is enough.
JE

Thanks for this. One of the many docs I've seen gave me 2 full pages of supplements to take with no mention of what dosage for each and how to take them. The infectious disease doc and my PCP and one other of the docs I see for pain said "nuh uh". I will take all you wrote - esp about the peeling heels and ask. They can say yes or not and it can't be worse.

Thanks for sharing it all. We're all not doctors but we play healers (v. heelers) in this group!

JE

Why the proline again. Opinion: After my neuropathy improved by May-June 2022 from eliminating gluten, I wanted to get my leg strength back as much as I could, given I was 68. I wanted to be able to walk on my treadmill without holding on. I researched this and a big discussion was collagen. So I started using a very popular collagen supplement, but it made me nauseous. Looking at the amino acid breakdown, I discovered that collagen supplements, contain high levels of proline and hydroxyproline which cannot be easily obtained from eating lean meat or beans. One scoop of the supplement contains 1000 mg of proline, and they recommend 1-2 scoops a day so i settled on 1500 mg of L-proline. Is this appropriate for everyone? especially those with kidney disease? Probably not. Check with your health care provider before adding any supplement. I am not a doctor, and am just reporting on my experience. FYI: My lab career has taught me that annual blood work is VERY important. CBC and diff and chem profile to include what we used to call a Chem 12. CHECK your creatinine and calculated GFR as well as your liver enzymes, HDL etc annually at least.

Additional comment: The weak leg thing. I can appreciate anyone who teaches. I remember teaching my graduate chemistry course, which ended when I was 45 in 2001. Two, 3 hour lectures a week, 6-9 pm during the winter after I had already worked a full day in the lab! But I loved the interaction and I loved getting them interested in the beauty of science. Science is about solving problems through testing. When friends call today and ask me to speak to their HS son or daughter about a possible career in science I always say: (1) Do you LOVE to solve problems and then (2) do you love to test and measure things because science is about 1 and 2. and then (3) you need to tell people what you discovered because unless you do that, all your hard work has been wasted. If they ask me what they should be doing during HS, I tell them learn to use and love Excel, because it will change the way you actually think. WHAT? Years ago I was at a big meeting giving a talk. There were people there who had won the Nobel prize. No Joke. One of them came up to me and said "do you like Excel" I said it's OK. He said, wrong answer. "learn to use and love Excel, it will change the way you think about things, it will change your life" He was right. Data analytics, predictive analytics, and data visualization can all be done within Excel!!