Positive outcome???

So after waiting for years for my GP to refer me, I have been seeing a haematologist for 6 mths, 3 positive test results later, I have now got a referral to a rheumatologist!! I'm happy with this.... I've also got a referral to cardio for an echo, and I've to keep going to haematology as I'm showing abnormality linked to PNH???... Googled it as I've never heard of it, don't know what to think, they are repeating the test.....

(again!!!.... 4th time, and really bad at giving blood... Not fun!!)

At this moment, I'm not worrying as the haematologist, seems not to concerned, as two of the tests where positive, the other not.... She says that it has to be consistent , and over 50%, each time, for them to be concerned.... I'm currently below 10%.

So mostly positive ( pardon the pun!!) news for me, im trying for glass half full today!

4 Replies

  • Hello

    Well done for getting a diagnosis, finally.

    A few questions if I may:

    1. Where are you from?

    2. When is you appointment with the Rheumatologist?

    3. Are you on any medication for your APS?

    Best wishes.


  • Hi Dave, I've no idea when appt will happen, NHS dependant, so prob weeks, but after waiting this long... What's a few more weeks!!! I've been on warfarin for nearly 20years now, I've always just been told I had sticky blood, it's one of those things.... As I got older/my daughter got older, and the internet "appeared" I was able to do my own " research" and realised ... Sounds a bit dramatic, .... but there was others!!! And finding this utterly wonderful, enlightening, and supportive forum/group has given me the strength and info needed to push my GP, more so to do with my daughter, she is similar age to me when became chronically ill, and I just don't want her to suffer, anything I have been through. ( they have confirmed she needs testing!!) ..PS I live in Scotland Sarahx

  • Do email you GP or secretary of GP the list of consultants as they will find this useful for you and your daughter in terms of accurate referrals. hughes-syndrome.org/self-he...

    I may have given you this before... I am just as forgetful as everyone else at times!!!!! MaryF

  • Hi Sarah

    Thanks for your reply.

    Have a look at the pinned post, at the top right of this page, which has a link to the HSF list of specialists in the UK. You may find the right Scottish consultant in the list.

    Many of us on here have had to have private appointments, sometimes with Prof Hughes himself, in order to get things moving.

    Keep in touch with us all on here.

    Dave xx

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