Advice and feedback for a relative re Ischemic Toes

[MaryF]

It would be great to have some feedback re Ischemic Toes, if members have had that, what happened, which doctors in the UK were useful, how it was treated etc etc. This is for a relative, who is not on this forum yet.

MaryF

[HollyHeski Administrator]

Has this relative got Hughes/APS?

They really need to see a vascular surgeon who has experience with APS - my ischaemia is in my arms, with stenosis of sub clavian arteries. Over the years I've been seen at Royal Free, Adenbrookes and the last 15 years at St Thomas's.

[MaryF Administrator in reply to HollyHeski]

Yes they have Hughes Syndrome/APS and also Lupus tendencies etc etc. MaryF

[KellyInTexas Administrator]

Mary, I agree with Holly. She’s been investigated, I would think, as mush as anyone can be in the U.K.

It can , of course, be a very severe case of Raynaulds- at best.

I was sent by Professor Hannah Cohen to her Colleague , vascular surgeon Toby Richards UCLH. She wanted her own scans of vascular issues and valve function. In the office he has his own personal sonographer. So that saves some time, as you get results immediately.

I am not addressing your specific question, not exactly. But these issues are intertwining. I’m having so much trouble with my arm, like Holly. Is the the same clot? ( chronic?) is it new clotting? If it’s new each time, why? Yes - I’ve had clean scans between clots! Yes... but perhaps the sonograper was no good... perhaps the scan wasn’t best... you really shouldn’t have used a general radiologist to interpret scan- you needed a specialized vascular surgeon... yes. I figured that out all by myself, thank you!

I had GP refer to a good one. He agreed they were new each time. ( when scans were clean arm looked much better and didn’t hurt nearly as much. This is not rocket science.)

But as we have all heard before...” on this much blood thinner, you can’t possibly still be clotting. Especially since your titers are not particularly high, ( low and moderate ranges per Professor Hannah Cohen) AND you go in and out of sero negative/ sero positive status.”

Prof. Toby Richards said only have a vascular surgeon image and interpret scans. He said to me, “ I am structure- Hanna is function.”

I will say I think my vascular surgeon in Texas was / is his equal. I think the world of my vascular surgeon- it’s a compliment to both doctors.

Professor Richards is one of your top ( perhaps the top) Iron / anemia specialists in the U.K.

I appreciated the thoroughness Of Professor Cohens thought processes and proactive execution in anti coagulation management strategies. These findings helped guide and reinforce her decisions in my anticoagulation.

Therefore, I think vascular integrity and function in your relatives case is integral to understanding solution/ management.

Key concept: “ structure / function”

Hoping you are a ,” happy camper!”

Kelly