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?
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