Off to see pro hives team: So excited... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,337 members • 10,534 posts

Off to see pro hives team

amy1808 profile image
amy1808
•13 Replies

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

Written by
amy1808 profile image
amy1808
To view profiles and participate in discussions please or .
Read more about...
13 Replies
•
amy1808 profile image
amy1808

Hughes omg 😲

charlieab profile image
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 profile image
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 profile image
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 profile image
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 profile image
Yllek

I hope your appointment went well.

Wittycjt profile image
Wittycjt

Amy, how'd it go?

jetjetjet profile image
jetjetjet

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

Hope they got things straight with you .

C & J

MaryF profile image
MaryFAdministrator

Best of luck hope it went well. MaryF

amy1808 profile image
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 profile image
HollyHeskiAdministrator

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 profile image
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 profile image
amy1808 in reply to Wittycjt

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

You may also like...

Off to the Nufield Hospital today in Oxford to see Prof Paul Bowness

I am praying luck is on my side & I see a consultant that actually consults ....whats more one that...

Just showing off!

first dressage competition in 3 years!!! I am so excited... ridiculous really considering it was...

Fingers crossed update

and all looks ok so far. Prof Quenby was very excited by this she was almost dancing round the room,

Been to see Prof Khamashta...

asked if he thought I had good grounds for coming to see him because I really doubted my own...

Finally seeing a neurologist!!

been on aspirin for 20+ years then a new specialist I was seeing switched me onto Apixaban which...