Back at Square One...

[Andy_A]

Just thought I'd do a quick post as a semi follow up to my January St Thomas' maladies (apparently despite being very symptomatic and having had 2 positive anti B2 Glycoprotein tests before my visit, I dont have APS?), and my trips to UEA cardiology department (very efficient and polite) where I was told I have no primary cardiac cause for my problems, it was off to Papworth to be sorted for what is apparently very mild sleep Apnea (only occuring when I sleep on my back) and I was given a mandibular device (gum shield) which I couldn't get along with, and so was offered a go at CPAP treatment.

"A sledgehammer to crack a nut" is how the consultant billed it, "but in light of your other health problems lets get it under control before it becomes a problem", excellent idea thinks me, proactive health care, lets go for it, and so the fun began, I turned up for my overnight stay to get the equipment set up and can honestly say that I've never met such polite, caring and attentive staff within the NHS, absolutely brilliant service, the only snag being that although I volunteered for CPAP therapy as a quick fix it wasn't explained to me that as my condition is now considered serious enough to warrant the equipment DVLA have to be informed, and I now have to prove that I'm compliant with the therapy and get my consultant to write me a letter so that I can get my licence back, bit of a bugger that one, especially when you weren't informed, and need your licence as you live in the back of beyond...

That aside the therapy is a hard one to get used to, and I'm still struggling daily (or should it be nightly) with sleeping with a mask, my daytime tiredness has got worse, and I've now developed a great case of fluid retention around my ankles, along with huge shortness of breath (originally the cause of my hospitalisation last Christmas day which had since subsided) and a never ending itching feeling in random parts of my body, and I develop hives daily despite taking antihistomine tablets.

Anyway, the long and short of it is that I've been trying to see my own GP since January, and managed to do so last week, when I was told that the only place they will now refer me to is a clinical psychologist "to allow me to get used to living with whatever it is I have", and "sometimes there is no answer, it doesn't mean that nothings wrong, it means that you need to readjust to living with an undiagnosed illness", so there we go, I've gone 43 months and full circle within the NHS, consigned to the scrapheap, and sent to see the mental health team for the second tme : )

I was also advised that if I chose to go and see Prof Hughes privately then any diagnosis he may come up with wouldn't be recognised, so it wouldn't be worth my while going.

Comments, idea's, suggestions, anyone???

Sorry for the long winded rant, but it appears that positive B2 Glycoprotein counts, along with elevated rheumatology factors, 3 years of high creatine kinase tests and various others mean nothing to the "professionals" , and any attempt to get a resolution to the situation is akin to banging your head off of a brick wall...

[MaryF Administrator]

Hi there I agree with that Lynn says above with bells on. I would also make sure your thyroid is checked re inner itching and fluid on ankles. Please read my updated blog. I am seronagative hughes with clinical incidents and also have psoriatic arthropathy, sjogrens, SLE Lupus and hypothyroidism - for this last one, I like lots of patients failed NHS blood tests, but passed twice private ones, and Professor Hughes felt I was hypothryoid from other obvious physical symptoms. I too saw him and have been through several NHS mangles. It is understood by St Thomas that I have hughes but they write that I am labelled so... in otherwords I did not pass one of their tests. Doctors used to rely on part of the diagnosis being a test and the other history and physical factors takien into account. it would seem to often that only blood tests are used. I have also at 47 just passed SLE lupus test and other multitissue disease indicated. having had clear lupus incidents since teenage years! Don't give up, most of us are annoyed and you will get there., the sooner the better. MaryF x

[Annslack]

I agree with the above. Absolute nonsense that the opinion of an expert would be ignored just necause you seen them privately. So many of us have had the opposite experience. A whole new attitude once you have a specialists opinion. Very interested in the wheat gluten thing too. I went to Dr Khamashta I have never had any positive tests or any proven nlood clots but had a horrible illness with breathlessness and chest pain in hospital and on oxygen for three months. And recovered on heparin. I only got the treatment after a lot of pressure from my family and friends. We have a terrible family history of blood clots and. Two uncles had had similar symptoms to me. The consultant thought it was a placebo resoonse. He was awful so arrogant. I relapsed in the trsansition to warfarin because they botched it and even then they wouldn't believe it was a clotting problem. I was terrified of getting re admiTted. A year lkater I went to dr Khamashta and got a seo negative diagnosis and advised to sel f test. It was so great to have someone of hos status so strongly affirm that I needed to be properly canti coagulated. Best of all he listebed emopathised and apologised for the way I had been treated bu other doctors. He has been doing new research into more accurate tests which he mentioned in oone of his letters to the gp. It is so frustrating to have such a struggle to get diagnosed. The other he told me about is coronary syndrome x which they have found in some people. With Hughes. It causes angina tyoe symptoms but the abgiogram tests are clear. It has given me huge peace of mind to know I have him on my side. Hope this helps Ann

[Jane-Martin]

Hi, how can 2 positive. Anti B 2 Glycoprotien tests and all your symptoms result in a negative for APS diagnosis? these tests are recognised as markers for APS. Out of all of them, I show positive for these more than the others. Your GP is incorrect, go to see Prof Hughes. My sister also had a hard time getting a diagnosis from Tommies until Prof Hughes wrote to them. don't give up. Make an appointment now. Good luck. Jane xx

[bernieembleton]

Lynn is right. Go for Prof Hughes. An interesting Blog. All the best.

[jessielou]

Hi Andy

I echo all that's been said hon, go see Prof Hughes if you can and please let us know how you get on!

Take care gentle hugs love Sheena xxxx