Hi :) has anybody also been diagnosed with myasthenia gravis,catastropic aps (sle) and servere eye damage ,

[louby78]

Iam geting scared to go bk to hospital appointments ect they always discover something new!

[EllaRuby]

Hi louby 78,

I can so relate, I haven't got the the same combination as you but I have APS, Myasthenia Gravis, Crohn's Disease, Grave's Disease, Sjogrens syndrome & Endometriosis, unfortunately I think when you have one autoimmune disease your predisposed to getting a lot more!!

[louby78]

Im being investigated for endometriosis , I totally agree def feel like a medical text book and what one will be diagnosed nxt lol , do u have seizers ?? My gp just keeps saying I must faint a lot but I don't know a lot about seizers, I jerk pass out eyes in back of head make funny noises clasp my tounge between my teeth. And when I come round I can't move and 1 side of me is jerking really bad and get bad headache and then for the nxt few days I'm utterly drained. xx my partner fills me in coz I don't remember hardley anything x

[EllaRuby]

I've never had a seizure but have had jerky movements which Prof Hughes says is part of APS and I'm sure seizures can be too. Have you got a good APS doctor? Are you on anything for the APS? In my experience gp's don't have a clue about APS Xx

[louby78]

I have a renal team and neurologist and I'm under the warfrin clinic but to be honest they only seem intrested in my kidney and the mg and never say anythink about aps when I ask questions I feel like I get thobbed off and nobody listens my gp wrote to the neurologist and she must Not of taken any noticethe stuff I said happened wasent even mentioned in her letter to him I've called neuro department and left messages for him but I never get a reply , I take tables but since aps found only thing new is warfrin xx

[MaryF Administrator in reply to louby78]

Please do push for a referral to St Thomas, it is fine to send the link to the charity to your GP's secretary by email...it often shifts the block, I often do this a couple of days before an appointment! MaryF x

[louby78 in reply to MaryF]

Thank u that would be so helpful my memory has gotten so bad since I had a bad headache and my sight went strange I feel like I've been going out of my mind but now I have so much hope xx

[MaryF Administrator in reply to louby78]

Yes, well plenty of info and support on here, hope it does the trick. Mary F x

[MaryF Administrator in reply to louby78]

and if they will not listen then self refer to London Bridge for a private appointment taking all your NHS results with you. Mary F x

[Lure2]

Many APS sufferers have said that the Neurologists do not understand APS. I totally agree from my

experiences here in Sweden.

Rhematologist and Hematologist are the doctors that may perhaps understand APS. You must seek an APS-doctor.

What I understand you have been diagnosed with APS. That is good. And then I have read that you are on warfarin? That is good. If so you must try to keep the INR in in range.

This site is so very good with people to trust thus they are not doctors. I wish you good luck and do not worry because I think it will be fine soon.

Kerstin in Stockholm

[louby78]

Hi kerstin thank u. Don't get me wrong the treatment and care.they provide me for there speciality fields. R great ,I have said to my gp ect b4 but they just say I have everybody and fob me off !will look into how I can do this I do it has to be between 3.5 _4 I still after 3 years have weekly bloods my blood likes to see if every body is awake lol . I've only been on here a few days and the questions I've been asking for a long time about I now have some answers

[EllaRuby]

It was the same for me thank god for the internet!! If you can, get your GP to refer you to St Thomas's lupus unit. If they won't refer you there, I think on the hughes foundation website they have a list of recommended APS specialists around the country. Also another option, if you can possibly afford it, you can pay privately to go to the London Bridge Hospital to see Professor Hughes or Professor Khamashta and they will be able to help you. A consultation costs around £200.

Hope things get better for you soon and let us know how you get on. I'll keep my fingers crossed you don't have endometriosis too Xx

[louby78 in reply to EllaRuby]

Thank u ellaruby for all your help and advice xxx

[rainyNW]

I have had seizures about the time I had a heart attack at age 23. The hospital didn't know what to do. I finally figured I had Hughes three years ago and had positive tests for 13 years, i have had this since childhood with lots of abdominal issues (clots I now know). My CT scan of my head looks like I have MS but I don't it's all the damage from at least 6 TIA's I am told. I am only treated with aspirin....I pray it keeps working. Lisa

[Lure2 in reply to rainyNW]

Hi Lisa,

Do you have an APS-doctor? I do not understand how he can let you wait for your next stroke or TIA!

If I were you I would look here somewhere (I live in Stockholm) for an APS-doctor. There are so many doctors out there who does not understand what APS really mean. You have had positive tests for 13 years! I guess they are for the APS-antibodies?

I also started with Aspirin but had to change to warfarin and then my TIAS and microclots disappeared.

Kerstin in Stockholm