hughes syndrome

Hi everyone, I read a link on one of the messages for Hughes syndrome. My neuro thinks I have MS and I’m going for an mri on Saturday. My 12yr old daughter has been having lots of the same symptoms for the last 2 yrs…pins n needles, tight legs, pain, fatigue etc. Her paediatrician thinks we have a genetic problem, which, after reading a lot about hughes syndrome makes more sense to me. I have suffered with severe headaches/migraine for the last 18yrs alongside the other poss ms symtoms. I’ve also had several bloodclots and suffered the heavy clotting periods with numerous unsuccessful treatments. My daughter at only 10yrs started her periods with the same problem which I found unusual. Its maybe wishful thinking on my part but I’m going to ask my dr to do the blood test and hope we have a problem that is solvable. I just don’t want my girl to go thru the stuff I’ve had to deal with as she’s already getting very down at feeling unwell… Excellent info about Hughes syndrome…thanks :slight_smile:

Hughes is supposed to be tested automatically these days, but things do get overlooked. Definitely work asking about. It’s worth googling about the tests I think - I remember something about needing more than one test and it being possible to get negative results but still have Hughes? Info worth knowing about properly if you’re going to discuss it with medics. Karen x

Hi, I wrote all the info down last night so I can tell my gp .I haven’t had any recent blood tests as I’ve had tests done years ago to rule things out (bout 10yrs ago). My daughters paediatrician told me which diseases he was testing her for and didn’t mention Hughes syndrome, so here’s hoping…thanks Karen :slight_smile:

Hi, I was tested for Hughes, but only after asking…GP said it was an expensive test and there was arguement twixed GP and neuro as to who should pay!

Anyway it came back negative.

Hope you all get sorted soon.

Bad enough we have a serious condition, but not our kids too, eh?

luv Pollzx

Hi n thanks Poll, I saw my gp yesterday who said he will test us both for Hughes syndrome nxt week…my daughters paediatrician rang me this morning to say that I could have Hughes because of previous dvt’s but not my daughter because no history of blood clots and its not genetic. When I went on the hs website there is a family tendency! …I’m ignoring what the paediatrician said and letting her have the test…he’s already written down inaccurate info coz he’s not listening fully. I’m not so fussed for myself but I’m constantly worried about my daughter because of her age