Can anyone recommend an MD who understands PA?

[Greeneyecolor]

I know most of my friends here are not in the US, but I'm hoping for a referral to a doctor (any specialty) in the US (particularly in the New York/Long Island area) that understands PA well. Thanks!

[lb9999]

I’m hoping for this too. I’m also in the US, in FL. My GPs have been helpful to prescribe injections, but I’m in no-mans-land trying to mange my own care. I hope you can find someone!

[Greeneyecolor in reply to lb9999]

Thanks. Getting a bit desperate up here in NY. Hope you find what you need too!

[EllaNore]

Hello Greeneyecolor, I am from the US in Iowa. I was watching the Tamron Hall show and they had Keltie Knight on there who has a rare anemia. The show was about medical Gaslighting. It was fantastic. I cried through all of Keltie Knight's segment. Because it hit home so much. This is the doctor that saved her Dr. Shikah Jain, in chicago. I have the phone number but feel I shouldn't post it. However you can look her up. google her like I did. I am waiting on a call back.

I just went to the mayo clinic. spend close to a grand getting there, rooms food, pet care, etc. I have never been more disappointed in any doctors. I had high expectations, but when they came back with fibromyalgia, and stress, I was livid. Talk about Gaslighting. My letter to them in response was such as I told them, if I had wanted a GP diagnosis, I would have gone to my GP not a Mayo clinic Neurologist. Try this doctor. she is probably very busy since the show, but call anyway and see if you can get in. I am waiting for a call back since yesterday morning. which is not long at all. I won't get my hopes up though as the let down is too damaging.

This was the show I watched. I hope you can watch it or find the full episode

tamronhallshow.com/episodes...

Good luck

[Greeneyecolor in reply to EllaNore]

Thanks for the info! I will look into it today. I hope you get that call back soon.

[EllaNore in reply to Greeneyecolor]

Thank you. good luck. 🦋

[wedgewood in reply to EllaNore]

Sounds like you have the same problems that we have here in U.K.! . You can always give confidential information - i.e. like doctors names etc, by way of private messaging .

[EllaNore in reply to wedgewood]

Thanks Wedgewood. Yes it seems we are all in the same boat. 😔 at this point, just validation on my medical records would be great. Instead of stress and fibro. I filed a complaint and asked for that to be removed from my medical records. That I do not approve of that diagnosis. We shall see. Medical Gaslighting for sure!

[wedgewood in reply to EllaNore]

Yes -you are right !

I really believe that if the treatment for P.A. were a tablet manufactured by the Pharmaceutical industry , we would have no problem at all in getting adequate treatment .

[EllaNore in reply to wedgewood]

For sure!! I am not sure why it is such a big deal to allow us to get an accurate diagnosis let alone a prescription for daily B12 injections to be administered at home, just like insulin and ozempic for weight loss and other weight loss injectables that are prescribed all day long. Much more deadly and risky than B12. There is no way they can justify that. All they have to do is allow us a real prescription and allow insurance to cover it. I can't for the life of me see any legitimate reason for this and why we can't change it after all these years? If we had hearings and events here in the US, to picket and protest, I would be there every day. What can I do? I don't even know who to write to to protest for medical change. If I did, I would write to them constantly.

[wedgewood in reply to EllaNore]

The one big trouble with injectable B12 ? It cannot be patented —so cannot make any profit for “ Big Pharma “. No interest in it .

[EllaNore in reply to wedgewood]

Right! 100%

[wedgewood in reply to EllaNore]

We just have to be thankful that we have this forum ! I don’t know what I would have done without it ,

[EllaNore in reply to wedgewood]

Absolutely. This forum is a lifesaver.

[Greeneyecolor in reply to wedgewood]

Not sure how to private message here. I'd be happy to if someone had an MD refereal for me.

[Crimesolver]

After trying various doctors including Mayo, I found successful treatment with an Environmental Medicine Naturopath.

[EllaNore in reply to Crimesolver]

I would love that. Did your insurance pay for it? Everyplace I have spoken to has been out of pocket.

[Crimesolver in reply to EllaNore]

Work insurance Cigna used to cover cost, but now that i am retired i have to pay on my own.

[EllaNore in reply to Crimesolver]

I see. Thank you.