Sticky Blood-Hughes Syndrome Support
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Weight loss and APS

Hi .. My son, had another mini stroke last November which will be his 11th. He will be 56 on Friday and had the first stroke at the age of 30. Due to the number of strokes (all of which he has had in his sleep) he suffers from bad memory problems, his walking is bad as he stumbles and is prone to fall. He is now doublely incontinent and he tends to sleep at any opportunity when bored or on his own. We now have an added worry - weight loss! He sees a specialist at UCH London, also his GP and has had so many tests to find out the cause but nothing has come to light. I would be grateful if anyone else has this problem to let me know if they conquered it. Thanks

4 Replies

Hi Zimmer - I was looking back over your history and your were going through a battle with the Neurologists at Queens Square against the Rheumy's at UCL. There are very good Hematologists at UCL - Dr Hannah Cohen is very respected with APS and part of a clinical trial. I would be asked to be referred to her without hesitation. She would be the best person to get him on the right medication as it sounds like from what you are describing that he is not there yet? Is he on warfarin for instance?


Nice to hear from you again and I can see that APsnotFab has answered your question.

She knows a lot of this illness so please follow her advice I suggest. I also wonder if he is properly anticoagulated as that is the No 1 priority to feel good.

Best wishes to you and your son from Kerstin in Stockholm


Have had similar problems with my weight. Everyone thinks I'm anorexic. After stroke no 2. I dropped 2.5 stones over a 6 month period. Was 6.5 stones but have put on 2 stones and I'm now healthy 8.7llbs taken nearly a year. But wouldn't say it's the healthiest diet. Nearly all been as much carbs. Bread potatoes cheese. Rivoroxoban has been better than I was on warfarin. I hold a job that's strenuous but manage ok. Memory not the best. Long term memory is ok. It's short term that doesn't seem to stick. Workmates very patient as I ask same questions every few days. Frustrating. Not much help for you but just to let you see it's more common than you would think wishing him all the best x


Hi sometimes some of us have a Thyroid condition alongside the Hughes Syndrome/APS which can cause weight loss and weight gain, I also agree with what APsnotFAB has told you regarding Dr Cohen! MaryF


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