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@dreneeballengee

Thank you for making contact with me. I will read the article you have shared and will get back with you when i look at the list of meds & food and let you know.
I will be more than happy to hear from others. This has been a very lonely road over the past few months. And there are days when I don't think I can keep going.
Something that I forgot to put in my original post, if I can share it with you. I have been working on family genealogy for a few years. Couple of weeks ago I was looking at an obituary for a paternal second cousin. He died of cancer, a six year battle with Pheo! May I say that rattled my cage. I sent a copy of the obit to my PCP and I see her on Mon Aug 14. Can't wait to talk with her.
I will be back in touch this weekend.
Thank you!!
Renée

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Replies to "Thank you for making contact with me. I will read the article you have shared and..."

Having a family member who also had this disorder is certainly interesting. I'll look forward to hearing from you again.

You are welcome.

It is so hard to navigate all this solo. Specialists don't talk to each other and expect your PCP to coordinate. Primary docs are so overworked they just don't have the time!