Do you think I could have Aps?

[EllaRuby]

Hi everyone,

I'll try and keep this as brief as possible. At the age of 17-19(roughly) I suffered severe headaches/migraines along with flashing lights at the sides of my eyes. Since then I'm now 31, I suffer from extreme fatigue, terrible memory- I have been unable to study, learn to drive, read a book as I cannot hold onto information or process it properly. I was quite intelligent before all of this, I can look really stupid and strange. I also get my words mixed up and back to front.

I have been investigated for MS as I suffer from pins and needles in my hands and feet, trigeminal neuralgia and strange things with my eyes blurry, cant focus, black/white dots, zig zaggy lines and something which I can only describe as a feeling as though they were bouncing!! MRI and lumbar puncture all clear.

In the last year my severe headache/migraines have reappeared. All the other symptoms have persisted since I was 17.

My medical history is Crohn's Disease, mild Myasthenia Gravis, endometriosis, previous graves disease/overactive thyroid, vitiligo.

My mother strongly positive aps antibodies-acl and lupus anticoagulant, but no history of clots & Lupus My grandfather Aps & Lupus, My uncle MS, My auntie Rhematoid Arthritis

I had some blood tests done about 4 years ago, I think they were igm, igg and iga, they were all negative. Does this rule Aps out for me?

[MaryF Administrator]

Hello, and welcome, the answer is - yes it is quite possible, also your history regarding relatives makes it more likely. The tests required to be done are on our Hughes Syndrome Foundation website. many of us are sero negative, this being either having had positive tests only to go negative, and the disease does not go away. Although in some people they can have all the worst clinical symptoms and events and remain stubbornly, as far as tests go negative. I myself am one of these, and many others also. Please see this paper! ard.bmj.com/content/62/12/1... I am hoping along with some of my colleagues that our website will carry more about this soon. As Professor Hughes often says himself, it is the tests failing the patients, not the patients failing the tests! Please keep us informed as to how things work out, you do need to see somebody, and our charity website also lists medical practitioners in the UK who have the knowledge to help. If not in the UK, please let me know so I can find somebody for you, with the help of other members. Mary F x

[EllaRuby]

Hi MaryF,

Thanks for responding, makes me feel better that I'm not alone. I have an appointment to see Professor Hughes in October, my gp isn't interested. I'm so used to doctors palming me off and making me feel like my symptoms are nothing, but thanks to this forum I plucked up the courage to make one. I just worry about wasting the Professors time and looking silly!! If its not Aps, I hope he has some idea what else could have caused my brain to stop working!!

If it is Aps and I'm started on treatment, should my brain start functioning properly again? X

[MaryF Administrator in reply to EllaRuby]

Hi most people do improve with either aspirin, or anti coagulation or both, and sometimes people who are very fatigued do well on Plaquenil, he will know and help you and has seen countless people with a profile like yours, and will be clear on whether he thinks you have or have not, and also convey that to your GP! Further on from that we then have on our data base people in your own area, who your GP can refer to if he sits up and reads the correct paperwork. Good luck and let us know how you get on. Mary F x

[EllaRuby]

Thank you so much for your responses MaryF, its really appreciated. Will definitely keep you posted X

[Salty]

Hi EllaRuby, it sounds very likely that you may have Hughes. Is it possible for you to get retested before your appointment, that way Prof Hughes can review his thoughts including your blood test results--whether they are positive or negative. There are people with Hughes and negative blood tests. My severe migraines and trouble thinking got quickly better on the correct treatment. Trigeminal neuralgia has been associated with Hughes. You could try taking aspirin before your appointment to see if it helps your symptoms. For me, it did nothing (but plavix and lovenox worked wonders), but for some it does help.

[EllaRuby]

Hi Salty,

Thats a great idea, I'll ask my GP, if he will do it is another thing!! Thats great to know your symptoms improved. I have thought about trying aspirin but having Crohn's disease your not supposed to take it.

Thank you for responding X

[EllaRuby]

Hi there,

I wanted to update, I've now seen Professor Hughes and he has diagnosed me with Hughes. I'm starting on plavix and seeing how I get on with that. Hopefully this will be enough, if it isn't, he suggested a trial of heparin. I'm going to my GP next week to get the prescription and hopefully to get a referral to Professor Kamashta at St Thomas's. After reading other posts not sure if this will be possible if they are discharging so many.

I have no idea how much to expect from these treatments. Its been 13 years that I've been unable to work/study/learn to drive, really hope I'm able to do these again.

Also just wanted to say what a lovely man Professor Hughes is, I have never met a doctor like him and I've seen a few!!