Finally been to st Thomas', and feel safer and in the right hands!!

[emmaj]

Hi all, i finally got my referral to St Thomas' - lovely man and worth his 'wait' in gold!!!!

He asked most of my symptoms before I even told him,and had the all knowing look on his face and sympathised with how it interferes and takes over your life instead of the usual look of horror and recoiling mannerism that most consultants have that I see ha! He agreed with the fatigue and the prejudices that come with such an all rounder of an illness that is so hidden and how we all feel when we 'look so well' as people see us but cant see the devastation under the surface,and how we have to almost hide whats going on for fear of being called hypochondriacs or insane! I swear if this was a few hundred years ago we would all be burned at the stake for being not normal. He agreed with everything i said,and although advising not to jump the gun,he agreed that it seems neurological in nature with me, and said it could be Lupus too - more symptoms I have and have developed recently bear more than just a resemblance to it, but we'll see. I laughed when he asked for more blood tests to be done as nothing ever shows up apart from IGM levels to show theres an auto immune disorder there but no answers as to which one - thats always down to clinical evidence diagnosis,and I really hope he's able to think outside the box instead of just relying on blood test results - im sure he does as a quite a few of us on here have sero negative results. He took 12 vials of blood and I felt quite ill !! He was very interested in family history and basically said that because of my family history the other consultants have really just been writing me off as neurological related because of the history which is worrying. But - back on 4th Jan and feeling like finally I will trust whatever he says as he certainly knows his stuff. Thanks Mary F for your knowledge,and im so glad for St Thomas' and all their work there - god knows what would happen to us if it wasnt for their work and how ill and in danger we would all be. Im anxious but happy x

[MaryF Administrator]

Glad to hear it, and well done you. Mary F x

[jessielou]

Hi Emma

So glad you had a good appointment hon! Chuffed for you, hope all goes the right way and you get the help you need!

Take care gentle hugs love Sheena xxxxx

[Hidden]

Hi Emma

So pleased to hear that you had such a positive experience. Out of interesst, were you seeing the rheumy or heam team at St T?

X

[juliapulia]

They are great at Tommys - they diagnosed me with Lupus, APS -Hughes, Sjogren's,mixed connective tissue disease. Everyone is friendly and supportive and Kay, the nurse who rings me to remind me to have blood tests or with the results, is very sweet and kind.

[Manofmendip]

Hi Emma

Well done, really glad that you have had a good consultation.

Best wishes.

Dave

[emmaj]

Thank you all xx

[Hidden]

Hi Emma, Sounds like you're getting the proper treatment and Dr. Hughes sounds like he is not only a great doctor but good and kind person. I wish I was living over there! If any of you know of a similar kind of doctor in the New York/New Jersey area here in the States, please let me know as my experiences with the doctors here have been very negative. Thanks so much. Best wishes for you, Emma and thanks for letting us know how you're doing. Florence

[emmaj]

I know that he goes around the world spreading the word on hughes, he told me that if i thought id had a long journey to get someone in the know about aps then imagine how hard it is for others in other countries! x