How long for a referral?

Hi everyone

I was diagnosed with APS at St Mary's, Paddington in 1993/94 after suffering 3 concurrent miscarriages, I went on to have a further 2 as my doctors at the time did not put me on the required medication early enough and wanted to wait for me to have an appointment at St Mary's. As I already had 1 child I made the decision not to try for any more children and put APS and my miscarriages to the back of my mind.

I was always curious as to why I could carry a child to full term without any complications, then 'suddenly' have problems and be diagnosed with APS out of nowhere. The internet now makes it easy for us to find answers to questions that long ago would have been left unanswered so a few months ago I remembered to finally do some research on APS.

I was stunned and having been living in a mild state of panic ever since. I have never been informed of the complications, various symptoms or potential life-saving treatment of APS. I went immediately to see my doctor, who after much discussion agreed to refer me to a haematologist... I am still waiting for an appointment - does anyone know how long this should take? I will be phoning the doctor tomorrow to chase progress.

In the years from 1993/94 my father, fit and healthy, died from a PE/heart attack at the age of 60, my cousin died in February this year, aged 50, from a PE and my 9 year old nephew has been diagnosed with epilepsy, despite there being no history on either side of the family. Has a genetic link been proven? If yes then I see those 2 deaths as being preventable and will hopefully be able to explain why my nephew has developed epilepsy.

I'm really angry that at no time over the last 18 years have I been appraoched or advised by the medical profession to have further tests to prevent my APS developing or to help manage it. I even went for blood tests about 10 years after being diagnosed because I felt so exhausted all the time but this was put down to working full time and bringing up a family.

My symptoms are as follows, but like many of us, I put these down to all part of being me and have never attributed them to APS:

1. Brain fog

2. Words muddled or forgotten mid way through a sentence

3. Fatigue

4. Headaches

5. Aching and pains in ankles and feet - I sometimes can't walk on them because they hurt so much

6. Pains in hands

7. Heavy arms

8. Restless legs

9. Restless body, can't sit still

10. Skin rashes - face and neck mainly

11. Severe allergic reaction to sun

12. Blotchy skin

13. Problems with balance - feel like I'm falling off my shoes

14. Problems with balance - fall, trip or walk in to things on a regular basis

15. Feeling mentally and physically exhausted.

7 Replies

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  • Hi there,. sorry for your various trials and tribulations on the road to diagnosis. I am 47 and only got diagnosed, (recently), Lupus can do funny things with rashes and the sun, so they should certainly be checking you out for this. The symptoms you so clearly list are pretty typical for most people, hopefully you have been classed as an urgent referral! All the best Mary F x

  • Thanks Mary x

  • Your symptoms sound so familiar and many of us have the same experience.

    Are you taking any aspirin if not maybe you should consider it.

    Regarding the genetic link more and more stories are emerging where several family members have symptoms. We are certain my Mum died of Hughes syndrome but autoimmune disease was only diagnosed after her death despite repeated trips to the GP who told her she had a 'bit of a tired heart'!

    I hope you get some answers soon, let us know how you are doing.

    Kind regards Sue

  • Are Hughes and Lupus, do they both have the same symptoms?

  • The antiphospholipid syndrome can be a component of Lupus, or it can exist independently, in which case it is called "primary antiphospholipid syndrome," or good old 'Hughes Syndrome."

    So, as you can imagine, many symptoms can overlap, but Lupus involves some symptoms which manifest differently. Most notably, rashes and sun sensitivity are more likely associated with Lupus rather then Hughes.

    It's complicated. And I'm sure someone here who knows more then I can elaborate.

    Looking down your list of symptoms I recognize many which I have had and which have been discussed on these Boards often.

    I hope you get your referral soon,and , and you definitely should get a referral soon. Most of us had symptoms of APS for months or years before diagnosis, which often came only with a life threatening complication. So ideally you would want to avoid that whole life threatening part, but remember -- most of us carried on with our undiagnosed APS for months or years WITHOUT problems.

    But, when faced with a situation in which I feel powerless it often helps me feel better if I do something. So, while waiting for referral you can: stay reasonably active if you can work around those pains and balance issues (pool exercises? a stationary bike in front of the TV?) stay hydrated; avoid clothing which constricts -- especially constriction on the legs; (I'm assuming you don't smoke here) hold your breath when walking beside 'puffers;' (some of us have noticed a relationship between smoke exposure and INR dips-- and yes, this may be our imagination, but . . . ); try not to sit for long periods of time but try to get up and move about, even a little, ever so often; and consciously try relaxation techniques throughout the day. I have profited by a chance view of a TV doctor who suggested: inhale through nose for a count of 8, hold for a count of 4, then exhale through mouth to a count of 7, trying to make sure you exhale as much air from your lungs as easily possible.

    Have you tried an NSAID for the pains? You might talk to your GP about this: Many of us on anti-coagulants are discouraged from taking them due to cross-reactivity. But if you are not pregnant now, and you're not on anticoagulants --- they may help. Their "side effect" is blood thinning, and if you have APS a little bit of blood thinning can be a good thing.

    Hope your referral comes soon. And let us know!

    And ask your GP about an NSAID in the meantime -- aspirin, advil, naprosyn, etc.

    Gina

  • Are the tests for lupus and APS similar? Is everyone automatically tested if one is suspected to have APS?

  • Thanks for all the comments and advice. I have a telephone call booked with my doctor tomorrow before being referred - not sure why!

    I don't smoke and I do find that exercise helps. I have also put myself on a daily course of low dose aspirin (75mg).

    This website is a great resource - keep up the good work everyone, it's so nice to know you're not the only one.

    Thanks again

    Michelle

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