Anyone seeing Dr Yousuf Karim?

[Spicer21]

Hi,

I'm anticipating that I may need a referral to a specialist re possible lupus myositis and APS/Hughes Syndrome. The nearest specialist to my home in East Berkshire is Dr Yousuf Karim. I would be grateful to know if anyone has or is seeing him and how they found the experience.

Thanks in advance.

Fielder

[MaryF Administrator]

Hi there, no not personally but several do, and of course one on the list, hope it goes well.  MaryF

[Spicer21]

Hi APsnotFab  

Someone told me that Prof Graham isn't taking any new patients - whether that's right or not I'm not sure - so they were referred on the NHS to his colleague Prof Beverley Hunt at St Thomas' Hosp (and she found her to be really helpful).  Dr Karim is Prof Hunt's colleague and apparently trained under Prof Graham; he's listed on the Guy's "Louise Coote Lupus Team" webpage guysandstthomas.nhs.uk/our-... As well as working at Guy's, Dr Karim works at Frimley Hospital in Surrey, which my GP might be happy to refer me to because it happens to be under the same Trust as my local hospital.  (My local hospital was failing so Frimley took over management.)   I'd obviously like to see the absolute best but atm I'm in so much pain I'm not sure that I'm up to trips to London, whereas my husband can take me to Frimley Hosp in his car.  Would you nevertheless still go to London even though Dr Karim has the right connections, so to speak (and lists his interests as being in APS and lupus)?  Thanks Xx

[Spicer21]

Thanks APsnotFab, I've pm-ed you for more details. X

[Sleepy_rach]

Hi,

I see Dr Karim at Frimley for a different autoimmune condition and borderline lupu, so cannot say what he's like for Hughe's syndrome but I can say that he is attentive, thorough and has a very good bedside manner. I am happy with him. He's very research focused and is happy to use current research to inform his treatment decisions which I find refreshing.

Good luck.

[Spicer21 in reply to Sleepy_rach]

Hi Sleepy_rach,

Thanks very much for your reply.

I hope you won't mind me asking you another couple of questions...

Do you always get to see Dr Karim or do you often have to see one of his assistants?

Also, do you know if Dr Karim is open to considering treating those patients with symptoms but who are sero-negative, i.e. those without the appropriate anti-bodies in their blood? (I ask this because I have had experience of having trouble getting a diagnosis and treatment for another auto-immune disease that I suffer with, i.e. ocular myasthenia gravis, which in me is sero-negative.)

I am guessing that Dr Karim might be open to the above as he is happy to use current research to inform his treatment decisions; it smacks of someone who is open minded and very interested in his specialism. That was so good to hear

Thanks in advance

Fielder

[Sleepy_rach]

Hi fielder,

I have always seen Dr Karim - first time at Frimley itself but subsequently at Aldershot Centre for Health as this was easier for me to get to. So I'm not sure if that's the reason I've always seen him. The downside I've encountered is Aldedshot is he only has clinic there once or twice a month so it's hard to get an appt. He always wants to follow me up at 6 monthly intervals but it ends up being nearer 8 because of full clinics. Frimley is presumably much better though as he's there more.

Re the sero-negative thing, I'm not totally sure, but he is open minded, very interested in autoimmune disease and seems very capable of using his clinical judgement weighed up against the potential risks of the drug/treatment. He doesn't seem as hindered by protocol as other doctors I've seen. In my case I have positive ANA and lots of other symptoms but don't quite meet the lupus criteria. He hasn't treated me with lupus drugs because of the risks and the fact I'm trying to conceive, but instead of write me off and discharge me from his clinic he keeps seeing me and repeats the bloods and reviews symptoms and says he will start treatment if things deteriorate. In the meantime he's trying to find other ways of helping me.

Hope this helps.

[Spicer21 in reply to Sleepy_rach]

What you have said has helped me a lot, Sleepy_rach - thank you.

I've just checked and Frimley is actually closer to me, so I guess I'd just risk the possibility of not seeing Dr Karim every time.

Dr Karim certainly sounds very approachable and understanding - a rarity in my own experience of seeing other types of specialists (mainly neurologists) on the NHS. The fact that he is cautious about treatments is reassuring too. I say this because I was eventually offered immuno-suppressant drugs for my sero-negative Ocular Myasthenia Gravis, but I refused them because I felt they were 'a sledge hammer to crack a nut' and I'd rather not risk their serious side effects (and just live with my double vision and droopy eyelids - as hard as that actually is to do). So, being under the care of someone like Dr Karim, who appreciates that these decisions are a balancing act, would really suit me.

I hope you will hear the patter of tiny feet very soon.

Really kind of you to reply. Thanks again.

Fielder

[Lure2]

Hi, I read what is written above. I reacted as you wrote about "double vision".

I have APS with all the antibodies in high titres since 2002 and live in Sweden so I can not tell you which doctor to visit , BUT I had double vision and several neurological eye-symptoms before I was anticoagulated and those symptoms disappeared when I was properly anticoagulated.

I think I would follow the advice of APsnotFab and see a Specialist in London. Perhaps she can suggest a Doctor to see. You do need a Specialist as you must know if you have Lupus or APS or eventually both. These illnesses can be very difficult to diagnose especially if you are sero-negative. Then you must go on symptoms.

I wonder if you are on Warfarin and have other neurological symtoms more than doublevision? I had also sudden headache for some seconds, vertigo when the room was spinning, lost my sight on my right eye for some minutes, saw the heartbeat in my eyes like a vertical line when I went up a hill or stairs.

Best wishes from Kerstin in Stockholm

[Spicer21 in reply to Lure2]

Thank you for your response and concern, Kerstin.

I've had my binocular double vision since 2009 and I'm pretty confident that it's due to ocular myasthenia gravis. Although, that said, I am aware that it can be so easy to put any new ocular symptoms down to my ocular myasthenia gravis, so I will be vigilant with any new symptoms regarding my eyes.

I'm not on warfarin. (I am hypothyroid though and on levothyroxine.)

I'm keen to seek help and a diagnosis as soon as is practically possible. The trouble is though, I'm laid up in bed with terrible thigh pain at the moment, so travelling to London is out of the question, but I am hoping that I might be able to go there if/when my leg pain improves. APsnotFab has very kindly given me some names of the best specialists to see in London, but the travelling is the problem. (Dr Karim trained under Prof Hughes I believe, so I was hoping he might be a good alternative and I just decided to see what people thought of him.)

Kind wishes,

Fielder

[Lure2 in reply to Spicer21]

I wish you "good health" and hope you will find a Doctor who knows what to look into as to symptoms from these tricky illnesses!

Please let us hear how it goes for you!

Kerstin

[Spicer21 in reply to Lure2]

Thank you, Kerstin