1. < Blood Cancers & Disorders

Need Help - Hematology won't do testing

Posted by wiggins32 @wiggins32, Nov 28, 2022

I developed iron deficiency anemia 4 yrs ago for no apparent reason or event. I'm allergic to oral iron, so infusions required. The past 2 yrs, the need for infusions increasing. In 2022, I've had 4 infusions. The symptoms of IDA are life-altering for me. I've begged for testing beyond standard bloodwork, but they won't do it. I tried a 2nd opinion. No tests show source of blood loss, but my iron saturation is usually around 5, and other abnormal blood results. I have asked for a bone marrow test, but no luck. With the drop in Ferritin happening much more, I can't understand why they won't investigate. No tissue samples taken even with severe gastro issues (no cancer found). Any suggestions? I've tried changing physician group but every other group seems to fear my current provider. I'm stuck and sick.

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wiggins32 | @wiggins32 | Jan 22, 2023
In reply to @jerrysgirl3 "They're great about doc ! Oddly enough I found a great PA who is a great..." + (show)
@jerrysgirl3

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. 😁

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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.

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1 reply
wiggins32 | @wiggins32 | Jan 22, 2023
In reply to @jerrysgirl3 "Covid was actually out in 2019 i believe. I think my daughter and her family had..." + (show)
@jerrysgirl3

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.

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The U.S. went in lockdown in early 2020, so not surprising to hear of cases in 2019. Arrgh.

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raremiracle2 | @raremiracle2 | Jan 22, 2023

Posted by wiggins32 @wiggins32, Nov 28, 2022Posted by wiggins32 @wiggins32, Nov 28, 2022
This is beautiful: what a spirit (reposting) Thank God for your angel neighbor! As much as the medical system, and government, have failed in your care for 20+ yrs, there are people who care. We aren't medical specialists by training, rather it's because we're forced to educate ourselves and others, and advocate for improved Healthcare. One person may seem insignificant to impact change, but there is healing within when we connect with others who understand. I am alone with my dog, but tiny miracles are out there. We must maintain hope and soldier on. Brighter days are ahead. Expect miracles, my dear raremiracle. ♥ (We all need to hear this and yes! we need earthly and heavenly angles around us at all times) God bless you wiggins32 Prayers and hugs

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jerrysgirl3 | @jerrysgirl3 | Jan 22, 2023
In reply to @raremiracle2 "Posted by wiggins32 @wiggins32, We are rare; so it doesn't matter, we are skipped, ignored and..." + (show)
@raremiracle2

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!

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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.

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1 reply
jerrysgirl3 | @jerrysgirl3 | Jan 22, 2023
In reply to @wiggins32 "Oh girl. I don't know of anyone in my circle who has had such adverse reactions..." + (show)
@wiggins32

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.

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I never had an issue with flu or pneumonia or tetanus vaccines.

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1 reply
wiggins32 | @wiggins32 | Jan 22, 2023
In reply to @jerrysgirl3 "Omg! Did you go with a disability lawyer????? I went online and found a disability law..." + (show)
@jerrysgirl3

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.

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I agree 100% that @jerseygirl is entitled to disability!! It's criminal what the Judge said to her. Grrrr. Every one I know who was finally approved used a lawyer!! It's the only way. It's sad but true. I am not on disability bc I was eligible for full SSI benefits. Even though I was forced to retire bc of illness (just couldn't do it anymore), I just was overwhelmed and quit my career. I lost my car and my home. My salary was excellent and I lived comfortably, but my body said NO...you are DONE. I'm grateful to be living in a tiny studio apartment that's only 200 Sq ft, but it's enough for me and my pup. The biggest blessing is that I have 100% medical coverage with Medicare + an expensive supplement (I pay $400/mo in premiums). The insurance coverage is a Godsend. We are never hungry, and I can't complain. God is good.

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jerrysgirl3 | @jerrysgirl3 | Jan 22, 2023
In reply to @wiggins32 "As for daughter, neither of mine wants to hear a word about my health issues. I'm..." + (show)
@wiggins32

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

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Sounds good to me ❤️❤️💙

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wiggins32 | @wiggins32 | Jan 22, 2023
In reply to @jerrysgirl3 "They're great about doc ! Oddly enough I found a great PA who is a great..." + (show)
@jerrysgirl3

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. 😁

Jump to this post

Yassss! So happy you've found a great PA. To feel hope again is priceless. Let's keep the train going. Hugs

REPLY
jerrysgirl3 | @jerrysgirl3 | Jan 22, 2023
In reply to @wiggins32 "Woohoo. Great news! Sounds like 2023 is off to a good start. Funny 😁 thing with..." + (show)
@wiggins32

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.

Jump to this post

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.

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1 reply
wiggins32 | @wiggins32 | Jan 22, 2023
In reply to @jerrysgirl3 "I think that's fabulous !!! You have found that rare and wonderful doctor who is actually..." + (show)
@jerrysgirl3

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.

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I'm guessing she's in early to mid-forties age range, which is young to me. And yes, she is definitely seeking out an immunologist with focus on the immunoglobins (not easy to find those that have interest in the IG category, but I know she is determined. She is very tolerant of my overkill with lab & imaging results over past 5 yrs. I only share key info, but she is appreciative rather than disinterested. I have appt tomorrow and actually can't wait (who looks forward to doctor appts? Lol)

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