Is it worth being referred to St Thomas's?

I had an excellent Hematologist, until he retired recently, and he used to give me advice on APS and talk to me about the symptoms etc. Unfortunately, he has now retired and been replaced. The new person will only talk to me about my INR levels, and gives the impression that she doesn't really believe that APS exists! She wants to reduce my INR target range to below 3, and I had to explain how awful I feel when it is below even 3.5 before she left it at 3.5 to 4.

The pharmacist who measures my INR suggested being referred to St Thomas's instead, but will I gain much from this? I was diagnosed with APS in 2005 following a stroke and I have virtually all the symptoms of APS that vary in severity from time to time.

6 Replies

oldestnewest
  • Absolutely it is worth it... if the rug has been pulled from under you, and you feel unsafe with the current status quo. St T's would certainly put some weight behind your original care! Do if you decide to go, take all paperwork with your history written out in bullet points, regarding your health, and don't leave anything out. Best wishes. Mary F x

  • Hi

    I had a stroke in 2007 on an airplane and eventually was sent to St T (after 9 months misdiagnosed MS) I found the staff at the hospital to be excellent and I am so glad I went. Thyey got my life back and even started my own business 6 months later!

    If you can get reffered I say yes go and meet the experts at St Thomas London.

    Good luck.

    Garry

  • Hi Garry, I too have been dx with MS but have all the symptoms of APS so my Neuro compromises and calls it Lupus Sclerosis. I live in Canada and because my ACL titre is only 22 they will not give me the dx of APS but insist I keep on the aspirin. I am also considering going to St T. From where I'm sitting here on the back burner I wonder if being treated with coumadin or other would make me feel better. I hate that I can't go for a walk or stand for longer than 5 min before I'm exhausted. By the sounds of it treatment has worked for you. Did it cost a lot to be seen and treated and how long did you have to stay there? I would love to know because it's starting to look like it's the only hope I have.

  • Thanks for the replies, I appreciate it!

    It is frustrating that I have APS and had a stroke, but look 'normal' so to most people that means I'm putting it on. It's always good to speak to people that understand, which I guess is why St T's will help.

    I'll just have to convince my GP now!

  • Yes yes yes, get refered to st thomas' they are fabulous and will really help you. It is so worth the long journey x

  • Thanks for the comments, I have been referred now, and really hope that they can answer the questions I have!

You may also like...