Professor Hunt

[Greenmil3]

I know from previous readings of people’s posts on here Professor Hunt divides opinion.

I finally had a face to face and she was fantastic. She read through all my tests answered my questions and actually told me what was wrong with me. It is cerebral APS but the easy explanation is multiple minor strokes (not TIA) but also have temporal hypoperfusion which explains a lot about my changes in behaviour! I got real answers that meant a lot to me and now friends and non friends understand the issues I face a lot easier. I am now being referred for possible research as most people with the hypoperfusion have dementia or Alzheimer’s!

Onwards and upwards

[Star13]

There’s an old saying, “everything comes to those that wait”, in your case it seems to be the case. I’m glad you have got your answers.

[KellyInTexas Administrator]

Hard to type the words “ fantastic news!” … but we all here in this “club of APS friends” know what I mean.

Has she offered any change to your treatment plan?

What is the current plan as opposed to the former plan?

What additional therapy do you/ she suggest in helping you with daily tasks or overall “flow?”

What might we learn vicariously from her through you that we could share with our GP’s or neurologists , hematologists, rheumatologist’s etc?

( for example, I have mentioned on various occasions the term cerebral APS, and my GP has never heard of it. He can’t even find it in Google searches!)

[Greenmil3 in reply to KellyInTexas]

Kelly

The only thing she could do was increase my hydroxychloroquinine to help with the fatigue. I’m already seeing a clinical psychologist at Guys and have Prof Hunt has asked a consultant neurologist to see me who resides in queens square London and does research on exactly what I have but not on any as young!

I will see if I can find where cerebral APS is talked about rather than cerebral involvement in APS.

[HollyHeski Administrator]

I am pleased for you, to have a specialist listen and understand goes a long way to help with our mental health.So many of us go through years of not being believed, you've just proved that your determination gets answers. Credit and respect to you.

As you say onwards and upwards- I really wish you further progress with your treatment plan x

[Greenmil3 in reply to HollyHeski]

Holly thanks so much it’s been a long 4 years so far

[Frodo]

Good to get answers. Having read your post, I found the following research study, which interestingly used a different kind of scan, called a Spect scan, which shows up things the MRI doesn't. Did you have one of these scans? How many APS patients have these, I wonder.

journals.plos.org/plosone/a...

[Tofino5]

They say knowledge is power. I’m glad you have gotten some good answers to help guide the doctors and you in decision making, and hopefully leading to better outcomes! Wishing you all the best on this complicated journey.

[BeckyPRP]

This is great news!!! So glad you have clearer understanding of your condition….

[Donna-M]

I am so glad you got your much needed answers from Prof Hunt. She was my Doc when i lived down south, i was under her care during my pregnancy and even though my boy was born 3 months early weighing 1lb 10oz, i truly believe if not for her and the Lupus pregnancy clinic, and NNU/SCBU at St Thomas’ we wouldn’t have our now 28 year old son Jonathan.

I was under her care again when I had TIA’s until I moved back up North.

I have even been in touch with her since living here when I couldn’t get answers. She is an amazing Doctor and tells it as it is.

I’m glad you got your diagnosis, I hope goes well for you. Big hugs. Stay safe xxx

[Wittycjt]

Good for you, answers are a wonderful thing.

[MaryF Administrator]

Great to hear that you had an informative and supportive appointment. MaryF

[my_story]

How did you get an appointment with her. I'm struggling just to get an appointment at St Thomas

[Greenmil3 in reply to my_story]

Hi

I was originally sent to Professor D’Cruz in the Lupus clinic by my local Remo clinic. I was then referred to Dr Paul Holmes in Neurology who sent me back to Prof D’Cruz who then discharged me to Professor Hunts team. Due to the rarity of my condition I had an original telephone conversation with Professor Hunt the a face to face with a registrar then due to the severity of my issues got a face to face with Professor Hunt. So it was not easy route but persistence and health degeneration did the trick! I would ask your local service for a referral and keep asking till you get the right response then sit back and wait it took me 3 1/2 years to get there.