Hospital visit : Went to see professor... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Hospital visit

amy1808 profile image
3 Replies

Went to see professor hay at Manchester Royal yesterday . Told him about the episode I had two weeks ago and he wasn't happy that my symptoms had come back so strong , I had him and a registra examining me . He now thinks I 

May have a narrowing of a artery somewhere on my left side seeing as it only effects that side.so I'm off for a MRA and to see a neurologist which I have already seen 3 of !!! Which of 1 e suggested this last summer but decided not to do the test in the end 😡 I will be furious if it comes back as that . 

He said in a ideal world Anne I would admit you for two weeks and do all the tests all at once but that's the NHS for you .

Sounds to me like they are looking for  something else as well as the APS 🙈When will this all end . 

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amy1808 profile image
amy1808
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medlock62 profile image
medlock62

I feel the same way. Alot of us are like ping pong balls being bounced from one doc to another and finding out we have more to deal with. I start IVIG transfusions friday and pray my body doesnt reject them as it is my only hope at quality of life. I will keep you and everyone in my prayers.

amy1808 profile image
amy1808 in reply to medlock62

God it's hard work , I to feel like I have no life at all . NRI yesterday was 3.7 and now 3.1 so I thought I would email the clinic , there response was can't really suggest anything if professor won't put Warafrin up , no wonder I feel like crap today .

If anybody has any tips how to get it up naturally I would appreciate it x

MaryF profile image
MaryFAdministrator

I am glad you are having an eye kept on you, let us know how it goes at the next appointment.     MaryF

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