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minniepearl2 (@minniepearl2)

Undiagnosed autoimmune, may be MG

Autoimmune Diseases | Last Active: Feb 8, 2019 | Replies (4)

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Hi Minnie,

First let me say I am so sorry you are going through this. I certainly can relate. I have been dealing with my issues since 2013 with no certain dx. I have been to so many physicians and had ever test you can think of. My frustration is the physicians not talking with each other. Ever time I have an appt. I feel I am provided the updated information. My husband states, ever appt. is like the first. Coordination of care is poor, and none of them agree with the other.

I have been off work since February 2017. I am a Nurse by trade. It is driving me nuts being at home. I just want someone to fix this or tell me what it is and what to expect and I could digest and move on.

I hope you find your answers soon.


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Replies to "Hi Minnie, First let me say I am so sorry you are going through this. I..."

That is what I am also going through. Since 2015 for me. Many symptoms daily, with some days being far worse than others. I've seen multiple doctors & specialists but can't get a definitive diagnosis. All suspected that I have polycythemia vera (a rare blood cancer) and one suspected leukemia. My blood test results all pointed to polycythemia vera except for one…the JAK2 mutation, which is a major diagnostic criteria for the disease. Problem is, my blood test results all point away from secondary polycythemia. None of my results match the secondary form, and all but one match the primary form. But that one missing one is needed unfortunately. I'm not receiving the care/treatment that I should be receiving. I've lost a lot of hope and respect for the medical field. 🙁

@minniepearl2 You are in my prayers