anti-Ku antibody and UCTD

[redmaggie]

Hi folks, I hope you are enjoying some spring weather where you live.

Does anyone else have a positive anti-Ku antibody? I also have anti-smooth muscle antibody in my blood work (which is not thought important) I do have a lot of UCTD symptoms, hence the diagnosis. Thanks!

[Hedwig121]

Hi There. Snap! I have this antibody and it's partner Pm-Scl75. Depending on which Consultant I'm dealing with comes a different diagnostic label. I've had Overlap Syndrome, Scleroderma Sine Scleroderma, UCTD with limited features of scleroderma and a few other odd ones. I tend just to use UCTD- short and snappy. I was misdiagnosed with ME/CFS some years ago but managed to get an out of area referral to a specialist ME/CFS Centre and more blood tests should up the antibodies. From that moment attitudes changed and the medics began to look at my symptoms differently and believe what I was telling them. I managed to get a further out of area to the Royal Free in London to the specialist clinic there to see Prof Denton. Very helpful and lots of advice on how to deal with troublesome niggles.

I hope you are getting lots of support and advice. It was a lovely Spring day but still very cold here.

[redmaggie in reply to Hedwig121]

Hi Hedwig, thanks for your reply. It sounds as if you have been all aroung the houses with your diagnosis and I hope you stay on top of all your symptoms. Apparently anti Ku is rare (I read a few articles), but I don't know what part it plays in UCTD, how it may affect it's course. I expect it's very individual as most things are. That's a coincidence, I also see Prof Denton - I asked for a referal to the RF as my main complaint is erythromelalgia and the docs at the sclero. clinic there are knowledgable about it. Since my first visit in 2019 i have had all my other odd symptoms and new happenings brought together as UCTD (last year) It was a relief as I started to wonder if I was being a hypochondriac! At least my GP centre now has some official guidance and confirmation, before that they were hopeless someone has to join the dots!

take care, x