Looking for local help: I have a good... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Looking for local help

Kathyjo60 profile image
2 Replies

I have a good friend who was diagnosed with HS and is having difficulty finding doctors who thinks he's not a "crazy" person. He "feels" when his INR is <3. He feels great at a level between 4-5. Local docs freak out with an INR level that high. He has maybe 1 good week out of every month. He did go to the Cleveland Clinic to a specialist there who confirmed his diagnosis of Hughes Syndrome. Came back to Baton Rouge to doctors who still don't understand his condition nor attempt to be aggressive in researching it. There has got to be someone close by to help this man. He has gone from a hard working self employed man, father and friend to pretty much debilitated due to pain, swelling, and " fogginess".

All suggestions of help is appreciated.

Thanks, praying for answers for my friend

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Kathyjo60 profile image
Kathyjo60
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2 Replies
MaryF profile image
MaryFAdministrator

I agree with the answer you have already had from my colleague Hidden . It does seem to be an uphill battle for some patients regarding their INR, if physicians do not understand the condition,. I think you will have to go further afield in order to get help, and to locally make things easier, medical help wise etc. Maybe the local doctors need a few decent books to read. MaryF

Wittycjt profile image
Wittycjt

I created a post for you entitled APS specialist in Baton Rouge anyone? See if it gets a response. good luck

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