Just seen Professor Cruz with a result I think ?

[jessie68]

Hi there have just seen prof D'Cruz after last month being sold by Dr Sangle I no longer have APS. Prof D'Cruz looked at all my blood work and history and decided I have APS without doubt but because of low levels he is worried about keeping me on the Heparin as their is a risk of brain bleeds e.c.t. I have been taking Heparin for nearly three years without problems but he said the risks are there. He suggested a combination of aspirin,statins and plaquenil which will keep my blood thin enough without the risks. He said he is sending me over to hemotology at St Thomas to see someone as the Lupus clinic is only caring for unstable APS patients now. Has anyone else been sent over to st Thomas ? He is still at present prescribing Fragmin until I see someone at St Thomas.

Thank you x

[MaryF Administrator]

Thank you for the update, it does sound as if you are being monitored carefully which is a step in the right direction, and should things become worse, without your Fragmin, which I know you will be on the case with, they will have to re assess again. Make sure you have all the contact details and phone numbers you could possibly need, and keep us posted. MaryF

[jessie68 in reply to MaryF]

Thank you Mary x

[MaryF Administrator in reply to jessie68]

Thank you, services are being cut back everywhere, it really is quite disgraceful! MaryF

[minnime63]

I see Professor Beverley Hunt at St Thomas'. My first appointment with her was at Guy's but she transferred me over. It's a really lovely clinic. Very efficiently run and super friendly 😀

[jessie68 in reply to minnime63]

Thank you Minnime you have put my mind at rest x

[Fusch]

I have also been transferred from guys to St Thomas still under B Hunt

[Helene]

I also attend Professor Beverly Hunt’s clinic, has been seeing her for 4 years either at St. Thomas or Guy’s. I have mostly seen Prof Hunt but also Dr Breen and a couple of others, a great clinic. At times there is a long time to wait in the waiting room to see the doctor, but you always get the time you need once you are in so I don’t mind waiting.

[jessie68]

Thank you Helene and Fusch x

[emmaj]

Wow that seems pretty much how my appt went,basically playing everything down and trying t) say i dont have an auto immune condition!! I wonder what the real story is,would love to be a fly on the wal!! Keep ypur chin up hun. We have far too much evidence to be denied x

[jessie68]

Hi Emmja sorry to hear your in the same situation,i received my clinic report letter and he said I have Obstretic APS which only effects me when im pregnant. Very funny how 22 yrs after my last pregnancy I have tested positive for APS several times,aweful symptoms and a positive brain scan ! He denied the brain scan saying he could see nothing wrong but in his letter to my G.P he said he understands I have had a brain scan but hasn't seen the results. He showed me a brain scan image in his clinic on the computer and said it was mine !!!!! I don't know where to go from here but he has at least reffered me to Dr Breen hematology at St Thomas. I think we both need to hatch a plan to catch him out ! Please take care and you also keep your chin up,big Hugs x