Need to find a doctor for Sticky-Blood Hughes Syndrome

Looking for a doctor who is familiar with Hughes Syndrome in my area of the state of Maine, USA.

16 Replies

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  • Or Maybe in NH or Massachusetts, they are close to you I think. I am not good with geography. I hope you get an answer from someone

  • Thank you Wittycjt, NH and Mass are close enough but also difficult for me to travel to presently. However, I have been looking. This is a difficult to diagnose illness and more difficult to find a physician who is interested in or willing to look beyond what their accepted medical knowledge has taught them during their studies and practices. It seems to be something similar to the lack of understanding and acknowledgement of "Fibromyalgia around 30 years ago. That and Epstein-Barr syndrome were viewed as not "real diseases" from my recollection. I have been reading the articles found on this website, trying to gain better understanding of how this disease functions, its myriad manifestations, and connections to other common diseases. My understanding (which may be totally wrong!) is that once physicians through 'hit or miss testing' find something they are familiar with, they don't see the need to search further. That, to me, is where the problem lies. Researchers, and physicians who like to dig deep into a problem, to look for Hidden paths are more likely to look beyond what is seen. I am hoping I will find such a doctor. Time has definitely run out for me and I am frantic for a kernel of truth regarding this insidious disorder. I will stop my coumadin very soon, as no doctor will prescribe it. I have been so very healthy for years. Since my PC began tweaking my treatment things have been going downhill. He doesn't accept or even believe that I need this treatment, because he doesn't understand and is disinterested in learning more. Disappointing and frightening for me.

    Thank you, for your reply.

  • Hi, I am sure somebody from the USA on here will help you, usually quite a few will let you know! MaryF

  • I am so glad that you now are looking for a Specialist of autoimmun illnesses as you Neurologist and GP did not understand what you need from a Doctor with our illness.

    I wish you good luck to get a name from someone of our members in the US!

    Kerstin in Stockholm

  • Thank you, Kerstin. I appreciate your reply. After an extensive search, I find that there is no such specialist available in my home state of Maine, USA. I hope others will read this and direct me to a physician who might be able to give me more information. I have dual residency in Maine and also in the state of Connecticut, USA. Perhaps someone knows of a doctor in CT who specializes in 'Sticky Blood.' I'm hoping...

  • Hope so ..... but do not give up on a Specialist though!

    Kerstin

  • Have you contacted the Lupus Foundation of America? Look for their Local Chapter on their website: www.lupus-org and ask your question. Lupus specialists will be familiar with APS/Hughes.

    With good wishes,

    Ros

  • HI Pat50 - I sent one message and lost it - BUT here we go again - Mas.General Hosp has a program - i know some of my Dr's use to go there . Their are also a couple of good Dr's in Rhue. in Dartmouth Hitchcock in lebanon NH I can give u one's name if he is still there - i can't see him anymore but if he is still there he is great .if you PM me i can give you that info - we did have some people from Maine on here years ago , but i don't know how i would get ahold of them now .I am not good with this comp . BUT i will try to PM you - if you don't get it PM me . Thanks C & J ---- { jetjetjet }

  • you’re a peach jet, thanks, Cindy

  • Any thing for you my buddy !!! hope i can help .

  • You might try a search for CT and MA in the search box. There used to be a doctor in CT who was mentioned. I don't know if he is still here. In MA there have been some doctors mentioned. I know Maine is a big state, so driving to Boston is not easy.

    It also depends how well you fit into APS criteria as to how easy it is to find someone to treat you.

  • Thanks for the tip! I appreciate it! I'll do the search.

  • We are from Mi so it's not obviously in your state, but Dr. Brockenstedt from U of M hospital specializes in Hughes syndrome (APS) and Dr Knight in rheumatology also specializes in it also, that's who we just got set up with.

  • Hi mcnabb 32,

    I hope your husband is better from his stroke and is on anticoagulation. I guess you see one of those Doctors who you mention in your post. Probably Dr Knight, the Rheumatologist.

    Lucky husband who has got you to help him with his life!

    Have you read "Sticky Blood Explained" by Kay Thackray? Many members here have read it and liked it. She has got APS and writes about the different symptoms with this illness. It is a book which is not quite new with the latest oral drugs in it, but we have the same symptoms today and Kay is very good to explain how it is to live with this illness. There is also a second book, called "More Sticky Blood - Hughes Syndrome" but the first one is the most informative I think.

    Good Luck to you and your husband! Hope you stay with us here.

    Best wishes from Kerstin in Stockholm

  • Pat50 did you find the book?

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