Getting help!?!

Hi , what a great site.... I would love to hear people's ideas , I feel very alone and like nobody (gp) cares .....

I'm a 39 yr female that from as far back as I can remember , probably my 20's have been very aware and frustrated with my memory ...friends and family joke with me about it but I find it quite scary at times..I loose words and genrally feel cloudy ...I told my daughter to stop talking to me one day because I was trying to cut up an onion for dinner...too much going on makes me feel more cloudy ...I haven't always felt like this but feel like these were the start of my problems ...

I have had 3 miscarriages 7, 12 and a late 25 .... I now have 3 healthy children but after the miscarriages was advised to take an asprin a day with any future pregnancy, I had no blood test it was just a suggestion ...It had no more miscarriages after that ...

3 years ago I started suffering with pins and needles everywhere in my body apart from my torso ... I have had them everyday since ...They are worse in the morning I wake with them ..as the day goes on they genrally get better. .They are the bain of my life ...

I had them in my face once and thought I was having a stroke...I have times when they are stronger than others there seems no Rhyme nor reason.

I also have an ache in the top of my right arm ..like a dead arm ..its there all the time ...

I struggle with my eyes too , for what seems no reason they start watering and won't stop until I have to stop what I'm doing and close my eyes for some time ...it happens while I'm driving I have to pull over until it passes.

I have seen countless g's and a n urologist. ..The Dr's say they have no idea ....and n urologist says on paper his looking at classic MS symptoms , all the test come back clear ....

2 weeks ago I got woken by a stabbing pain in my head ..omg the pain it stayed with me on an off for a week ..until it moved onto a "normal" headache ...

I Google sharp pain in head and come across APS ..... I have spent 15 minutes practically begging the gp to give me the blood test ... well after a lot of explaining and pursuing I went for the test today ...It seemed to cause confusion in the blood test department and my Gp had never herd of it .... I need support from somewhere or something ...I know I'm not well but can't get help ...

Jules

11 Replies

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  • Hi there and welcome, and join the club so to speak. Getting our GP to do the tests is a great start, some GP's have really never heard of the disease. I do suggest writing short email, keep it short and too the point to the GP, via his or her secretary's email address, put these links in.

    1. Charity website: hughes-syndrome.org/

    2. List of specialists in the UK to refer to: hughes-syndrome.org/self-he...

    3. The full list of blood tests: hughes-syndrome.org/about-h...

    4. Newspaper article: telegraph.co.uk/health/4400...

    5. This Film:

    Also the charity has plenty of books for sale which will help you learn more.

    MaryF

  • I will do that thanks for your advise ... do you know how long I should expect to wait for the results from the blood test ?

  • A few days and be aware also that some of us are Sero Negative for Hughes Syndrome/APS please look at the pinned post with that subject matter should it come back negative. All the best. MaryF

  • Well thank you. MaryFx

  • Hi and welcome as Mary said "to the club"! Many of us are diagnosed only on symptoms. I was "lucky" to have all the antibodies so it was a bit easier to get a diagnose.

    I recognize practically all the symptoms you describe. So good that you have found us!

    I prefer the book "Sticky blood explained" by Kay Thackray. She has got APS herself and describes how it is to live with this illness and how much better we feel when we are well anticoagulated. "Sticky Blood "is the same as APS (Antiphospholipidsyndrome).

    To have an APS-doctor is vital.

    Best wishes from Kerstin in Stockholm

  • Hi and welcome

    As my colleagues Mary & Kerstin have said, welcome to the club.

    Where are you from?

    Please keep in touch and let us know how your tests results are.

    Best wishes.

    Dave

  • Thanks for responding ... I'm going to look the book up now

  • I agree with everything that has been said above. Please be aware that sometimes the tests can actually take a couple of weeks depending on the lab its gone to as they can do a test test if you know what I mean and run them again to see if they get the same result.

    As Mary says be aware of seronegative APS. Thats when you get negative results but you have all the symptoms. You will be told you don't have APS because they are not taking your clinical history into consideration.

    If this happens you may well have to think seriously about saving up and taking all your test results to a private Dr like London Bridge Hospital to speed up the diagnosis. Im afraid this is very much about becoming your own advocate and learning as much as you can for your own good and piece of mind.

  • Thank you .....much appreciated.

  • Hi , I saw my Gp today to get my results ... All three were satisfactory ... All I know is the levels should be between 1 and 10 mine were 2 , 2 and 1 ..... are these high or low? My GP has dismissed them anyway and wants me to go back to see my n urologist. ... Help I'm so frustrated ...

  • Have you not found your APS-specialist yet? He or she will understand your symptoms and also "get" what you tell him/her. You may be sero-negative and then you really need a Specialist on this illness.

    You have had very good suggestions earlier.

    Best wishes from Kerstin in Stockholm

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