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Sticky Blood-Hughes Syndrome Support
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In 2015 I was in good physical health and then things went down hill continuously. I developed mild tinnitus, then severe tinnitus (with more and more and louder and louder noises), then visual snow and all kinds of visual intrusions, and then last month I developed raynaud's and legs that keep turning purple or red. The rhuematalogist I saw thinks it could be APS and has ordered some blood tests.

Im in a pretty bad way mentally as have had over two years of worsening health wiuth no real answers. they thought iut might be MS at one stage on account of mutliple brain lesions. In meantime, Ive lost my job, had to give up my phd, lost my home and my wife left me. And the "mood music" to this has been 8 plus loud tinnitus noises screeching in my head. In short, Im feeling pretty exhausted, sorry for myself, and afraid.

Im not sure what Im asking. Just venting maybe.

I suppose one fear is that, if its APS, then my cognitive functiion could be affectyed, and it will be hard to carry on with reaserahc (which was my passion)? I already think I have lost a good bit of memory, although that could be the depression which has followed in the wake of the physical health problems.

Thanks for reading.

best wishes


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6 Replies


A lot of negative things have happened in your life lately! Exstremely Important pieces like job, love, home and health. No wonder that you feel depressed.

I really hope your Rheumatologist will find some treatment that will suit you if you have got HS/APS. With the right Specialist and the right treatment you will be fine again so you can be able to continue with your research.

Best wishes from Kerstin in Stockholm

Thanks kerstin. That sums it up very well I think. I guess feeling depressed is not that surprising in the circs.

I hope u are right about the research. I tend to catastrophise atm.

Hope u are doing OK today. Thanks again for your kind words and help.

PS I dont know how my post got signed as "tinnitus"! I think it might just have been one of the subject tags. :)


I forgot to ask you WELCOME to our friendly site.

As i said with the right Specialist and treatment we can live a rather normal life. Take care of yourself!


Hi charlieab. I was really sorry to hear of all you have had to go through. I do hope that you will get to the bottom of things very soon and get started on treatment - and be able to start re-building your life. Good wishes.

Having Hughes is not the end of the world! Much better to get a diagnosis so you can be treated then not know and continue to suffer. If it is what your Dr thinks then you will get treatment and no reason to think that you cant resume your life as it was.

Have you tried a baby aspirin on a full stomach to see if it offers and relief. Ask your Dr if you can do that while waiting for the test results.

Hi charlieab Im going to close this thread now as you have the identical one that is also attracting answers and it might get confusing. No one can put on anymore replies here but if they want to comment they should go to the other thread on:


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