Off to see pro hives team

[amy1808]

So excited 😆, how sad to be excited to be going to see a specialist x

[amy1808]

Hughes omg 😲

[charlieab in reply to amy1808]

Pro Hives team made me chuckle. I was wondering if they were in the playoffs!

Anyways, great news that you are going to see Hughes.

Good luck with the appointment and hope you get the answers you need.

[Lure2]

Hi,

That is the first most important step in the direction to get your life back to normal!

Please let us know if you can speak with this Doctor about HS/APS as then you know if he/she is the right person to help you.

Kerstin in Stockholm

[jetjetjet]

Well Amy I wrote a reply but it seems to have gotten lost !! ?? 0 well- Here we go again . I see you have been with us since April 2013. I know what you are feeling to be excited . I was dia. Sept i 2009 and was loaded with clots- luns {both } and groin -leg neck and left arm pit !! . It was Nov 2 2011 before i FINALLY got to another hospital and started to assemble a team of specialists .I had a Hemo that was big with the process of elimination, a hard thing to find here in the U.S. .So i would get excited for help and answers. Si I myself do understand what your excitement is . I have now 26 Dia. medical conditions though most under control now . I t was exciting to finally move forward with help , so many i see on here have had such a hard time getting anywhere so i guess in our cases it is exciting .Let us know how you make out . The best to you . a veteran of APS.

C & J from across the Puddle

[jetjetjet]

Hi Again Amy come to think of it I was in the ER here Once as i broke out from ankles to neck with red pimple like things and it was everywhere and i swelled all up and the nurse practitioner said i had hives - well come to find out when i pursued it further it was Petechia as far as the red things BUt the swelling is still a mystery. shortly after that the skin peeled off the bottoms of my feet -- they didn't understand that either , it passed i made it thru that one -- hope you don't go thru that . Have youy had any things like that ??

[Yllek]

I hope your appointment went well.

[Wittycjt]

Amy, how'd it go?

[jetjetjet]

How did thing's pan out ??-- Benadryl -- or maybe steroids ???

Hope they got things straight with you .

C & J

[MaryF Administrator]

Best of luck hope it went well. MaryF

[amy1808]

Well guys sorry for late reply . Appointment didn't start off well as his secretary hadn't give him my notes I sent up !! So we had to start from scratch . He has made a few recommendations for me i.e. See all specialists under one roof so Manchester here I come and he thought the first and leading Dr should be rheumatology not haematology , he didn't understand why I was on clomazapan , this could be why I feel nauseaous , he is going to have a couple of tests asked for by my Gp , a probe thing on my head that detects micro clots and breathing test as I cannot walk far without getting breathless . He explained all about APS , he was please I was self testing and said they use it there in preference to vein . I can Fly which no other Dr said I couldn't and no fragmin shot necessary before flight as I'm on clopidogrel and warafrin . He also said there are two new drugs that are nearly ready to treat APS instead of warafrin🎉🎉🎉🎉. Thank god , but all in all my friends he said go and enjoy life you know your limitations and do as your body tells you xx

[HollyHeski Administrator]

What a great doctor, what he says makes sense. Also given you hope and more importantly confidence!

Hopefully you are now on a road of achieving exceptance and quality of life. It may be bumpy and uphill but if you have good support, I know doubt you will get there.

Well done you and hope you continue to improve and feel better xx

[Wittycjt]

I'm not quite clear how you felt about the appt. I hope you're satisfied. The probe testing could provide some answers and it's always inspiring when told of new treatments... we don't feel we are forgotten. Best of wishes to you. Much success at/ in Manchester💖

[amy1808 in reply to Wittycjt]

Felt very positive about the appointment, only complaint was that he hadn't seen my history first x