Sticky Blood-Hughes Syndrome Support

Hi, quick question. Does anyone livedo when their hands are hanging by their sides?

It's like the blood pools in my hands and they get tingly and my hands and arms get covered in red blotches. I am diagnosed with MS but this does not seem to relate to MS. Thank you.

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Hi, if you feel that perhaps you need to look into a possible diagnosis of APS, there are simple blood tests which could be done, and you could direct this question to your doctor/consultant. Livedo Reticularis does crop up with Hughes Syndrome, however you would need to see somebody medically qualified about it. MaryF

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Thanks Mary. I do need to speak with my GP about this but as I've been diagnosed with MS and this is an expensive blood test, I feel I need to be able to "back up my case" so to speak otherwise, I feel I will be brushed aside at this point. I have some symptoms which could indicate APS and others that seem to contradict it.

I have never had a miscarriage but my son was born at 30 weeks due to placental abruption

I have hypothyroid

I have livedo

I don't often have severe headaches

I have dizziness

(I also have fatigue and memory problems but as I have two toddlers at home, I figure that pretty normal!)

So I'm not sure at this point whether to ask my GP.

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If you are in the UK, you need to look at the list of specialists on the list. which is on the Hughes Syndrome Foundation charity website, and ask your GP to refer you, however they will be more keen to do this after you have done a blood test which are inexpensive. The blood tests are also listed on the website. You could give your GP's secretary by email the charity website with these two things mentioned, with the email marked for your doctor's attention. MaryF

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I agree with my colleague Mary. Have the blood tests for APS done and go from there. Some people, who have APS (Hughes Syndrome) have been misdiagnosed with MS, so it really is worth checking. Dave S

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Thanks guys, I live in Canada so I'm not sure how aware doctors here are of APS. It seems you guys are ahead of the game in England!

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Hi there, bottom left name, you could contact them for advice, let us know how you get on! apsaction.org/ MaryF x

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Yep me tpo

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Yes you should have the blood tests done, I have the livedo patches when hands are hanging and they go cold too, even if I'm doing a workout at the gym it still does it...& that should be promoting circulation??! strange symptoms but quite pinpointing to Hughes. Let us know how you get on & if you have the tests done x

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Thank you. I will speak to my doctor after Christmas and hope she listens!

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Hi, I have livedo most of the time on my legs but suffer badly with livedo on my arms along with really bad tingling but only when I am on the phone for a while or drying my hair.

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I had the tests done (I think - Doctors receptionist only showed results for one test) and it came back negative. I'm still curious if I have Hughes but I guess there's no way to know. My Mum wants me to keep pushing as strokes are very common on her side of the family, but I'm not sure how I would do that.

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