Need Help - Hematology won't do testing

They're great about doc ! Oddly enough I found a great PA who is a great diagnostician and tests for things other doctor don't. He's young and spiritual and knowledgeable. Perfect for me. I left the MD for him hahahahahaha!! I also feel hope for the first time. 😁

Covid was actually out in 2019 i believe. I think my daughter and her family had it because I had to go over and sit the baby because they couldn't stay awake. That was the first symptom of Covid if I'm correct.

Posted by wiggins32 @wiggins32, We are rare; so it doesn't matter, we are skipped, ignored and passed over like we don't have a problem. I understand your story, been there done that and only insanity is facebook groups who traveled the same road. I never smoked, drugs or alcohol but people look at my lungs "stop smoking", scare tissue is from getting cold: cold induced asthma (Doctors like to think your smoking: not from cold weather or going outside.) I understand: hospital 30 days in Nov 2022 and no insurance (WBC 24-27-RBC 7.8 hemoglobin 19.2 and list goes on. Never was anemia (over load or leveled high all my life; first time anemia from Myelofibrosis goes on but I've been trying to get on disability for years, Doctor's notes 20 years back: Can't work due to cold (several judges denied me with doctors notes: Sept 25, 2020 denied again "judge said I was making up my symptoms (STILL NOT ON DISIBLITITY) 6 weeks later I was in hospital with cellulitis for a month $300,000. no insurance (infection as big as my arm in my back- hospital sent me home - no insurance for nurses so my neighbor next door would come pull my (packing out of my back and do packing) for free everyday for months. I would have died without my neighbors help) The hospital missed polycythmia 2020 so no insurance (son had SSI) that's what we have been living on for years. I was just diagnosed with polycythmia when I landed in hospital Sept 22-30, 2022 / this time medical emergency insurance (Insurance denied $85,000 hospital and medical bills so far "medically unnecessary " fighting it . This is medical neglected because of my rare diagnosis. So far the insurance only pays for medication, 1,500 on Hydroxyurea and numbers haven't come down (3 BPM 109/70 to 250/159 in mins) BP swings like my sisters (they go extremely low/high same doctor visit) I'm always high . If they would have catch polycythmia 2020: i could of had insurance and home health nurses but my neighbor has been my doctor/ nurse without a degree - she has saved my life several times (The government doesn't care if your alive or dead) ! We need this group: it's our only way we can feel normal in insanity world. God Bless YOU! My heart goes out to you!

Oh girl. I don't know of anyone in my circle who has had such adverse reactions to vaccines. My internist tells me I am prone to infections because my IgA is low. First time it was tested in 2018, and twice since then. Just a month ago, my IgA was 26, which is really low! Guess what? It can't be cured, and not even immunotherapy will help. What this means is that I am highly susceptible to infections in general. I only just found out about it! Now, I know why I've been chronic sick with back to back infections for years now. Also, I was told that this condition doesn't respond well to vaccines. Soooo. There it is. I've got all sorts of new Intel on my body from my new internist. She's amazing and I feel hope for first time in years. Finally have a 5-star doctor who also cares and listens. FYI, I lost over 50% of hair from Covid, but it's coming back over past year.

Omg! Did you go with a disability lawyer????? I went online and found a disability law firm and in two months I was on NYS disability. They sent me an envelope to send my medical records - I sent them back a box full lol!!! If you present evidence of an extreme disability such as you have, in PAPER form, a disability law firm should love you and help you. I was very surprised I got it so fast. Thank God Because $249 every two weeks was not cutting it. That was private disability. And that was when they sent it every two weeks. I had to threaten to call NYS disability on them. Then the checks came regularly. I can't believe they are not giving it to you. Gets me so angry!!! Now my husband and I help out anyone who needs help. We have to help each other because the hospitals and doctors don't.
Once again. If you didn't already, get yourself a disability lawyer. They only get a small percentage of your money when the court approves it. You DONT pay them directly.

As for daughter, neither of mine wants to hear a word about my health issues. I'm not 'allowed' to be sick in their minds. Their father (we divorced long ago) died instantly a massive heart attack 5 yrs ago. That shock+loss was more than they could handle. It was same year that my health tanked. So, I have a theory that they NEED me to be healthy, even if I am pretending!! So, I stopped saying a word about my health 2 yrs ago. They don't ask, and I don't tell. They talk with me much more now that I've had a miraculous recovery (in their minds). It's much easier to be silent on such things bc I realize my health issues are a burden they can't carry. The thought of me dying is unbearable. It's very weird, but I understand it now and not bothered by it. I'm their rock. Mother/daug relationships are complicated on a good day, right? My grandsons have lost 2 grandparents (my ex and their Nana...my SIL mother). And their living grandfather almost died a year ago, too. So yeah. It's on me to stay healthy and ALIVE. And I am very motivated to stick around for their sake and my own. Hugs

They're great about doc ! Oddly enough I found a great PA who is a great diagnostician and tests for things other doctor don't. He's young and spiritual and knowledgeable. Perfect for me. I left the MD for him hahahahahaha!! I also feel hope for the first time. 😁

Woohoo. Great news! Sounds like 2023 is off to a good start. Funny 😁 thing with my new Internist. At the end of my 1st visit, she said, "You are now in my "Top 40" list of patients". I had no idea that it meant I get royal treatment by staff and the 'red carpet' whenever I need something. What it really means is that she considers me one of her most challenging medical mystery case. Lol. I don't mind one bit!! I've never been treated so well in a doctor office. After being humiliated more than once in past few years, I am walking on clouds of hope and joy. It only takes ONE great medical professional to turn our lives around for better! Just ONE who listens and treats us with respect, and who does the hard work to find solutions. Just ONE.

I think that's fabulous !!! You have found that rare and wonderful doctor who is actually interested in someone with rare symptoms and a "different" kind of medical history. They will research and talk to colleagues. And maybe even discover something and be able to write a paper illuminating other doctors as to your condition. A rare find indeed. So happy for you !!😁
Just out of curiosity...is she young? My new PA is young but he is bursting with energy and knowledge. Not burnt out.