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