HI
Has anyone else found that they have high readings for other immunoglobulins? I do believe this to be true - having one we are predisposed to others. E.g my Igg is high but also my Ige is very high (allergies). I wonder if these others are related to the NKCells? I have a feeling they do, like I had a allergy reading 24 times higher than the normal rate. I was wondering if anyone knew if there was a definite connection as I asked my GP and she dismissed it as 'controversial'.
With Hughes Syndrome/APS often comes Thyroid problems, and also Sjogrens and in some Lupus, plus many of us on here have a variety of autoimmune diseases. I have the three mentioned here plus two more! MaryF
Thanks Mary. BTW how did you get your diagnosis for Sjogrens - think I have that. The saliva isn't a problem but dry eyes is a massive problem for me. Anyone know if there is a link to NK Cells?
Professor Hughes suspected my Sjogrens, bone dry eye test amongst "other places" and dry skin. :* Blood test revealed mild Sjogrens. To this day I still can't get a proper explanation for the bloods, I know that something was speckled but no idea what that means so can only assume it's not important!
Like you, no problem with saliva but I am always thirsty. Thyroid test says I am on normal range but I virtually chain drink!
have you been tested for diabetes???
Yes and despite it being in the family, thankfully all clear. For me thyroid was the more likely but they say all normal which is a relief!
Hi Lissylou
You mean..you are under Prof H and there's some questions remained to be answered? What is your formal diagnosis apart from APS / Mild Sjogren's if you don't mind me asking this?
No question, Prof H confirms APS, despite clinical history I have sero negative bloods. Sjogrens and Lipoedema diagnosed too.
Hi That sounds very good indeed..xx
Hi
I am going to see Professor Hughes (or one of his colleagues) and wondered, then, does he do all the tests and confirm diagnosis in the first couple of appointments? I've already had APS confirmed but would be very interested for him to confirm whether or not I had other autoimmune issues. Hopefully not.
I will be paying privately and don't live near London so it will be either 1 or 2 visits.
I was already being seen on the NHS so he wrote to my consultant and the local hospital undertook the tests. This was the most economical way for me to proceed.
Take as many recent tests with you as possible, as it will save you on paying for some tests. I get all my done before I go and take them along. MaryF
Yes Professor Hughes picked up my Sjogrens, my blood tests show MCTD and also bone dry eye test. MaryF
I have an elevated total IgM and all of my APS antibodies are IgM
Ay, that's interesting, so have you actually been tested for the 5 of them? I've been tested for 3 and am positive for 2 - Igg and Ige.
Once in the dim past, from some forgotten source I came across a factoid that with every autoimmune diagnosis your chances of acquiring another autoimmune issue goes up by half.
The exact mechanisms are still murky, but autoimmunity tends to fall into different families with APS, Lupus, Sjogrens and thyroid issues often found together. Inflammation seems to be a trigger? ( or is it a result? Or both?) of autoimmunity. So
anything you can do to reduce inflammation is good. I, and others on this site have profited from staying on a gluten free diet.
Sorry I can't speak to NK cells, but you have excited my curiosity.
Hi Gina
From what I understand, people tend to have a cluster of genes predisposing for different autoimmune conditions even though you may have only a few autoimmune conditions if not all. I agree, there must be triggers (could well be multiple triggers)..knowing women are far more affected in these conditions for example, lupus, hormonal factor as a massive trigger x
Hi Omega
Isn't the rate recorded as higher in women due to the fact that it's often tested after miscarriage (e.g. lupus) so that is why it's not always detected in men? Just a thought.
Hi Gina thanks for the info. Yes, I do believe reducing inflammation will help.
I ask about NK Cells as I am hopefully pregnant and also curious about their link - hopefully I haven't got them. I have not been tested but suspicious that I may and that this may be the reason why I have never naturally got pregnant (including possibly the APS). Just so wish I had found this out when I was younger. Am 40 (eek!!) tomorrow so running out of time.
Yes have a great birthday...MaryF
Thank you x
I believe there are a range of autoimmune conditions that seem to come together.
I tested positive for hypothyroidism, Reynauds and APS (confirmed diagnosis & treatment started), but also for SLE. I am now being tested for lupus nephritis, vasculitis and fibromyalgia. Add in a side of osteoarthritis, I am a walking (just) mess!!
Recently I was referred to a complex autoimmune clinic - I'll let you know how that goes.
(I always warned my toyboy husband that he'd be pushing me around in a bath chair before I hit 50!)
"Recently I was referred to a complex autoimmune clinic - I'll let you know how that goes."
Hi Bonnie
How interesting. What an apt name e.g. complex autoimmune clinic. Which hospital is this if you don't mind me asking this?
xx
I haven't been officially diagnosed with APS, although I am taking Aspirin which has been helping with headaches, brain fog & even abdominal pain. My rheumatologist is considering my request for a heperin trial. I'm being treated with plaquenil for presumed lupus or lupus-like connective disease. I was tested for immune deficiency a few years ago and found to have low natural killer cells. Also, the T-cell suppressor helper ratio was off. I don't know what this tells you, since after 36 years my diagnosises are still a bit tentative. However, I know that a lot of people with chronic fatigue have low natural killer cells. No doctor ever was ever able to tell me what having low natural killer cells meant. The resident immunologist told me "they saw it a lot." And the immunologist wrote in the report that it was "unremarkable." I've wondered for a long time whether it was "unremarkable for a lupus patient" or just "unremarkable." Maybe I'll ask my new rheumatologist the next time I see her.
Hi
It depends on how long you are having this "tentative" diagnosis. I don't know your situation from one post but if doctors are not skilled enough to diagnose you properly then it might be worth seeking a second opinion?
x
I don't think it is so much the skills of the doctors. In the US it seems difficult for doctors to act on history and low titers of this and low titers of that. Despite this I did find a doctor who treated me with plaquinil, which helped me considerably for many years. I had a flare of something scary and I had changed doctors, because my previous doctors stopped taking insurance. Then I was back at square one. There seems to be almost a fad of declaring women hysterical without asking many questions. Finally, I made my way to a good center. I brought in article by Dr. Hughes on serionegative APS and neurological manifestations of APS, and the rheumy told me they knew all about Dr. Hughes. She wasn't saying no to the heperin trial. She just wanted to wait. In the meantime, I'm on plaquinil and aspirin. The fatigue is still a big problem, but at least my brain seems to be improving.
I wrote a long post before: healthunlocked.com/hughes-s....
Thanks for your interest.
Thank you, AnnNY. Will have a read.x. Not sure but a place like John's hopkin's or Mayo clinic, they have more comprehensive diagnostic? (Obviously, I'm waffling things you may already know x)
No stroke on MRI? TIA won't show on MRI. x
No strokes, or anything like a TIA when I was awake. (I used to work with stroke patients, so I should be able to identify anything like that.) Once when I was taking a birth control to try to help with migraines, I felt a pain move from the bottom of my neck into my head in a vessel. I sat there wondering if I was going to have a stroke, but a little while later I felt the thing left my head on the other side of my neck. It then just disappeared. I'm afraid to tell a doctor that because they will really think I'm nuts. But my mother became somewhat dotty in her 60s and died mysteriously in her sleep, as did her aunt who was 10 years younger. And this aunt's siblings all died quite young. Recently, I stopped the aspirin as an experiment, and I started having problems speaking again and my memory went. I think I'm in a good center now, and they are understanding the reasons I do want to try the heperin. So hopefully, it is a matter of time. Clearly, I'm not the usual case, since it is a whole host of MS like symptoms without having MS. And my strange anti-Mylen antibody. Sorry, Sunshine, I think I hijacked your thread.
No worries AnnNy. That's the thing - drs do think we are nuts - well from experience, when I mention my concerns re - APS, he's like, no, you will be fine. No, that won't happen. No, I don;t know about blood checks etc. It all seems a bit surreal to me - like surely drs must know that APS causes strokes and heartattacks so why the **** do they pass it off like I've just said I have a tiny headache or something. I wonder if we could all campaign?
Thank you x
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