Feeling ill

[Greenmil3]

Hi I away on hold in isle of white and have come down with fever and cold feet last night. Bit of an effort breathing today and my GP who is looking into lung issues associated with APS. Does anyone have any information into what he may be referring to as little concerned something else might be going on.

[Star13]

Have you had covid? If not Id take a test to rule that out.

[KellyInTexas Administrator]

I’m going to suggest that you start following an American APS specialist rheumatologist called Professor/ Dr Jason Scott Knight. He also treats patients in clinic,

He is with the University of Michigan .

He is leading an AzpS lab there , and every team member is a very strong researcher and clinician as well.

You can sign up for news letters from the APS department.

He has a Twitter account

@jasonsknight

He just attended the international APS conference by zoom.

He took a screenshot of a doctor ( APS/ pulmonologist) hop posted top issues to look out for in APS patients. ( presenting at the conference.) Dr knights posted on Twitter as the conference went along.

I’ll go back and see if I can post it,

[Greenmil3 in reply to KellyInTexas]

Kelly thanks so much as St Thomas’s aren’t really doing much as I’m under the National Hospital of neuro surgery and neuro science for the ongoing brain issues and I think I lost some more a few weeks back!

[GillyA in reply to Greenmil3]

You might consider asking Queen Square to refer you Prof Cohen at UCLH (it’s all the same trust). I’m getting great joined up care between neurology (epilepsy and CVST) and her team who lead on complex blood clots - she is one of the leading APS specialists in the U.K.

[Greenmil3 in reply to GillyA]

Gina thanks for that but I am under prof Hunt for the clotting who again is a leading specialist and well as Dr Paul Holmes for neuro. Going to Queens Sq as I have a very rare interesting complication in my brain to do with the combination of brain stem and frontal lobe issues! But your kind advice will be borne in mind for future needs.

[KellyInTexas Administrator]

From the conference

Computer screenshot

[Ageingfemale]

Hiya. At the moment I go to St Mary’s hospital in London, they have a lung autoimmune clinic. I have an interstitial lung disease associated with APS/Lupus. They are great, organised various tests and then have multi disciplinarian meetings ( so haematologists, neurologists, rheumatologists etc) all meet to discuss the findings. They even sent me to Hammersmith hospital (part of the same Trust) to be checked out by another clinic that deals with Pulmonary hypertension (it’s high blood pressure in the lungs). It’s so reassuring to know these people are keeping an eye on me.

[Greenmil3 in reply to Ageingfemale]

Thanks for that my GP has ordered lung X-ray and has spoken to someone to get advice regarding APS involvement so will wait and see.

[Ageingfemale]

I’ll keep my fingers crossed for you.

[MaryF Administrator]

I a guessing here, that your GP will be wanting to a) rule out Covid and b) micro clots/clots in lungs. You may have to test more than once, I know this has happened with friends of mine. Do report any worsening or new symptoms. MaryF

[Greenmil3 in reply to MaryF]

Thanks Mary he is a new GP but has been in touch with APS specialists to get the correct advice. Normally only clot in my brain so think it may be one of the other lovely things APS can set off