Completely frustrated

I was reading through the last few months of Prof. Hughes blogs and so much of my life and that of my mother's life with Hughes Syndrome has become so clear. We have had so many symptoms that have either gone unnoted or just plain disregarded. I have been literally fighting with my doctors about the pain in my legs, shoulders, and neck, horrible migraines last for months, trouble with word finding, fatigue, lack of motivation, and trouble with my stomach. I don't see the doctors here in the US seeing any of this as being relevant to Hughes. I want to know if anything I can do to prove to these doctors that I am not depressed which they say is the cause of my stomach issues, word finding problems, pain in my legs, shoulders and neck, fatigue, and lack of motivation. My blood tests are testing borderline positive. These doctors literally tell us we just watch and wait. I feel like we have a death sentence that we are just waiting to be enforced hoping and praying if something does happen they are able to save our lives. It is so frustrating because family history sounds as if my maternal grandma and some of her sisters had Hughes and being both my mom and i have it, we are afraid my children are at risk. I do not want my children to have to deal with what my mother and I are going through. I believe my family could be a wealth of information while it is useful. What can I do?

14 Replies

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  • I totally agree about the doctors here in the US. They initially wanted to treat me for depression even though I had a TIA. The darned neurologists didn't even test me properly. When I finally tested correctly and positively they refused to give me an antidepressant even though I actually am depressed now. It has been a struggle finding a doctor who understands APS, and even now I wonder if I'm being treated properly.

    I suggest seeking an informed physician, even if that means doctor shopping. None of us should be forced to wait for a possible thrombosis. It seems as though proactive methods aren't preferred for APS around here, and that is a true shame.

  • I agree that here in the US, in my experience as well doctors are willing to give RX for just about any symptom, pain, high blood pressure, deprression , But are not so knowledgeable about the underlying problem, and don't seem to want search for the true diagnosis. I am concerned about my children as well, you are blessed to have a family history, I am adopted and have none, well I guess I do now though. Hope you can find a Doctor that knows what to do. I do know that good Doctors are out there, Hemotologist here in Texas started anticoagulant today ,there is hope. Tina

  • Here in NM we do have some good doctors. My Rheumy has APS as well and I am also being treated by her Rheumy. My problem here most of the time is these doctors are so afraid of the dEa regulations that they wont prescribe pain meds when the weather changes are Im in pain or when im in a flare. The ER docs have no clue and automatically suspect you are a drug seeker if you ask for pain meds. I just want to raise awareness and give these docs a lot more knowledge than they get from the page and a half they get in a textbook in medical school.

  • HI, I see that your post is a few years old, not sure if this will get to you. My husband was diagnosed with APS after a pulmonary embolism. We live in NM and can't find a doctor that knows anything. He's been seen by Dr Snowden in Los Alamos and Dr Bankhurst at UNM, both rheumatologists, both unhelpful. Any recommendations would be appreciated!

  • I advise you to put a new fresh question on our site! As you say the one you answer is 3 year old.

    You will have more answers that way.

    Good Luck from Kerstin in Stockholm

  • Here in WV I have great care from my hematologist. But I tried once to float the idea past him that my hip arthritis is Hughes related-- didnt go anywhere! " Not my area! Not my area?"

    Orthopedists treat arthritis, but since Hughes is considered autoimmune and blood related, they don't see Hughes as having any relavance to their practice.

    So in my limited experience, here in the US there is resistence to treating, even recognizing, that Hughes can effect so many different bodily functions. It's an autoimmune blood disease which effects blood vessels and that's that!( and this, of course, represents the more advanced attitudes as so many docs in the US refuse to acknowledge the existence oh Hughes! )

    Sympathies.

    Gina

  • I can only suggest that you club together with others and write clear letters and attach medical papers and films.. lots of us have had to do this here, including myself. Best wishes. Mary F x

  • Mary, do you know where i can find good creditable medical papers that i can take with me showing Hughes does affect the joints and causes pain.

  • I will have a read later today, and see what I can find for you. Mary F x

  • Where do you live....???In New York...Hospital for Special Surgery HSS.EDU (Rheumatology Department for New York Presbyterian Hospital located here) has MD's who are treating and doing research on APS. In the US HD called Primary Antiphospholipid Syndrome..

    Perhaps you know all this. Go to a RHEUMATOLOGIST

    In the Mid-West the Mayo Clinic has MD's who understand autoimmune disorders etc.

    And I go to Dr. Andrea Gaito MD in Basking Ridge New Jersey. She diagnosed my condition

    good luck

  • Forgive me...read the rest of your post and see that you live in NM......Are you on an immune suppressant medication.?...I'm on Plaquenil.......My MD believes you need to begin my addressing the root cause...ie immune system "over reacting"....In my case, 4 80mg Aspirin and 200 mg Plaquenil appear to be keeping symptoms at minimum

  • I live in the states too and it took 25 years for a doctor to finally diagnose me. I had numerous symptoms and unexplainable health issues over the years but it wasn't until a blood clot in the Fall of 2011 that I was officially diagnosed. I was told I had Anticardiolipids in my blood after my 2nd miscarriage back in 1989 but doctor was only concerned with getting me through pregnancy. She was convinced I had lupus but ANA was always negative. When I finally had 2 children and she couldn't diagnose me with lupus, she pretty much gave up on me. She never said that I needed to worry about my health in the future.

  • I always despair when Doctors do that. They are trained to heal and when they cant it is very frustrating for them but still no excuse to give up...after all we cant can we?

    I often feel like giving up when my tests come back "normal" especially when Im feeling terrible and I think that this time they are bound to show something, but they don't. And its even more disappointing when the ones before were "just" positive so you see the spark of interest in the Doctors eye only for the disinterest to return with the negative results. They dont know what to do with you and you dont know what to do with yourself except go and dig a hole and bury yourself. I dont know about anyone else but it then makes me less inclined to want to go back to see any Doctors no matter how bad I feel because I cant take the rejection, blank looks or sending me away with nothing to treat it anymore.

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