Sticky Blood-Hughes Syndrome Support
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Visit to Neurologist at St Thomas's

Hi all

Well today was the day for my first visit to dr Holmes at guys and st Thomas hospital for my first neurology appointment , and I have to say what a relief to have such an understanding open friendly consultation .

For those who have read my questions lately I have had a rough year Three major brain surgeries , progressive visual and hearing loss , balance problems , muscle twitching , cramps , memory loss , confusion cardiac problems the list is endless and the thrombophilia team are certain that along with my confirmed diagnosis of APS. That some thing else was going on .

MS. Has been mentioned so many times fortunately

Dr Holmes is certain it is not the case. However he is pretty certain I have a another underlying condition which is autoimmune so as we speak my bloods are on their way to Oxford university to be tested for voltage gated potassium channel

Antibodies , from what I gather it causes a syndrome called morvans syndrome which is rare and only 14 cases have been describes in uk medical literature the prognosis is not great but at least I could be closer to an answer .

If it is positive I will begin immunomodulation in the form of chemotherapy and it will be difficult due to my APS as some of the therapies increase the risk of clotting and considering my history of DVts and amputation of my leg as a result and multiple PE. And TIA it will be a gamble but benefits will out weigh the risks as the disease course is not pleasant .

So I don't really know how to feel yes I have APS

which has caused me 14 years of serious problems but if the test comes back positive it doesn't bear thinking about what could happen

But I do feel positive in that I finally seem to be getting some answer after seven months of seeing every speciality to be told something else is wrong .

I really liked dr Holmes too I feel very secure under his care

And with the multidisciplinary approach that I have experienced

Two weeks to wait now before I get an email for. Dr homes I will keep you all posted

Hope you are all keeping as well as can be


6 Replies

Well on the bright side as you say you now feel you are in safe hands and have a Doctor you can trust. This more than anything is so very important so you feel well supported. I expect that even if the tests come back negative that he will see it through and find out what is causing your problems.

Also I see that 90% of cases go into spontaneous remission, so you must remain positive on this because it means that out of the 14 cases over 12 of them must have gone into remission according to those stats! Hang onto that!!

Whatever the result we are here to give you support and try not to worry too much till then as hard as it is. xx


Wishing you all the best - and to hear about your confidence in your current doctor is great, in terms of solving this latest medical mystery. Please continue to let us all know about your progress and I hope those answers come back soon. Mary F x


Hi Dann

Have been wondering how you got on and glad you let us know. Im waiting to see him so youve given me a bit of confidence,thanks xxx


Best wishes for you, but I am so glad you are seeing a competent doc, and not one who dismisses confusing symptoms because they must be, by definition, generated by a ".Nutter."

But you're seeing a good doctor now, so remember, it's easier to fight a known enemy rathet then an unknown one.


Hi Dan. I don't no whether to send you a hug or what I should do but I want you to know I really feel for you. I am walking a very similar path to your's at the moment. I am having tests more test next week. I agree with you. I too have been so very ill for the last 6 years that all I want now is answers. I am trying to prepare myself for what I might be told. But I think really all along all I've wanted to know is what is actually wrong with me, Is there a treatment and what can we do about it if anything. The fact that you feel in capable hands is half the battle. I'm so glad that you have met a Doctor who you feels listens to you this in itself is great. The chemo is not as bad as you might think. I can't advocate it as the best thing since sliced bread, but it's do able. Your words make me think a you as a stong character looking for answers too. So keep that chin up and keep looking towards that brighter future, I know mine is just around the next corner as I'm sure yours will be too.

Love and hugs from here InSpain xxx


Hi Dan

Dr Holmes actually listens and set me on the right road for my cognitive problems. I have every confidence in him and wish you all the best xx


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