Sticky Blood-Hughes Syndrome Support
8,080 members8,320 posts

Feeling upset and confused

Today I went to the ENT specialist who has said he is almost certain I have sleep apnoea. I shall spend tonight wired up to machines to confirm then it's off to Oxford for a CPap machine. This has left me in a bit of a quandary because this doc says the symptoms that have been put down to APS could be caused by sleep apnoea. I'm not thrilled about having to sleep with a machine attached to my face every night but I'm more worried that this will mean my GP wont do my referral to immunology at Frimley Park and my APS will continue to be untreated (except for aspirin) and unmonitored and I no longer feel safe.

It will be nice if this machine eases the fatigue and joint pain but I still feel I should be under an immunologist. I was so certain I knew where things were going but now I'm confused and worried.

13 Replies


I think you should ask to be seen by an APS specialist, from the HFS list. Are you seeing one at Frimley Park.



You are most welcome and good luck.

Let us know how you get on.



Hi Dave, thanks for your speedy reply. I am hoping to see the immunology department at Frimley, I will take the name of the APS specialist listed here to my GP to ask for them specifically. I'm just worried that the sleep apnoea will muddy the waters with regard to whether I need treatment and monitoring for the APS. I think I do and my GP seems to agree but he said we need to build a case.

To that end I have been doing some interesting research recently. It occured to me that as a registered OU student I have access to the extensive university library. I've pulled quite a few papers (having checked that I am allowed to, which I am as long as they are for personal use) but I can't find time to read them until my next assignment is under control.Hopefully I will find something interesting and useful to get the referral.


Hopefully they will look at the issue of Sjogrens and possibly Thyroid that can go with Hughes Syndrome/APS. Let us know if you need any help finding papers, I can normally track down most things. MaryF


Yes I agree with above. One condition should not preclude the investigation of another. I would atill ask.


So............this ENT consultant (?) is telling you that you haven't got APS.....why does he need to be interfering with things he is not capable of diagnosing? It seems out of line to me. Complain if needed.


Hi Omega,

He's nottelling me I don't have APS, he's merely telling me that my current symptoms are all down to sleep apnoea rather than APS so my GP will no longer feel there is any need for me to be seen by an APS specialist. I'm hoping I can still persuade him to do the referral.


The symptoms of APS are very different to sleep apnea otherwise we would all be sent to sleep clinics and as far as I know that is not even on the list of possibilities! This Doctor does not know what he is talking about as far as APS is concerned. Please calmly take the details of the HSF website which explains about symptoms etc to your Dr and point out the differences and list all your symptoms. Also make sure you have the blood tests done which are nothing to do with sleep apnea either! Ask your GP if you do have APS and its not diagnosed and treated, is he/she willing to take the risk of what may happen to you if you remain untreated? That will normally make them act!


Well said indeed!



Hi, I Think APsnotFab is telling something that should be a good way to handle it if you have the selfcondifence and are not too tired on that day.

Write down the things that APsnotFab suggests. Good things.True things also.

How did it go with the machine?

I will think of you and I want to wish you good luck!

Kerstin in Stockholm


Thank you all for your support and advice. It really does help a lot.

My APS diagnosis is happily not in question. I was diagnosed almost 10 years ago after the loss of my daughter at 20 weeks of pregnancy. I had already had previous miscarriages and a dvt as a result of taking the pill at 16 (I'm now 37). I was being seen yearly by a haemotologist at st mary's paddington but he discharged me last year as I had been stable for so long and hadn't had any spontaneous clotting incidents. I didn't seem to have any ongoing symptoms of APS, at least none that the haemotologist took seriously. I have always suffered pains in my legs (put down to my excess weight) and frequent patches of livedo on my legs and arms and occasionally torso (the doc said that was nothing to worry about). I also suffered from frequent migraines which disappeared almost completely when I put myself on aspirin (his response to me asking if I should be on aspirin was 'if you like'). When the migraines started to come back I doubled the aspirin and they went again. Now I get 3 or 4 a year instead of the same number a month. I have also had ongoing problems with my ears and as a result my balance.

The problems for me started late last year with chronic crippling fatigue and joint pains with no swelling. These are the main symptoms that the docs say could be down to sleep apnoea. Or they could be down to the APS, or both could be contributing. Trouble is now I've started to experience these symptoms I no longer feel safe with no expert APS management. This is what I will tell my GP along with my research papers (although I'm struggling to find good papers showing the non-clotting related symptoms of APS).

Does this sound sensible?


The symptoms for APS are the same for clotting and non-clotting as the whole point of anticoagulation is to try and prevent a clotting incident. So don't worry too much about finding papers relating to APS symptoms that don't mention clots. Papers will only have been written for those who have had clots because they assume that everyone who has been dx with APS has had one! The fact remains that research always centres around those who can fall into the diagnostic criteria. That criteria has been set for research, so you see for those of us who are not research monkeys and lab rats (we cant all be perfect), the papers will not fit our mould!

There are papers at the top right of this page under "pinned posts" for seronegative Hughes which will be your best bet. They are the papers for the "freaks" of us who don't quite fit into the perfect APS world and who need to convince the doubting Thomas's out there! (excuse the cynicism) :-D

As for Fatigue and joint pain being a symptom of sleep apnea.....I cant find one search that mentions joint pain with SA. Im struggling to say something appropriate here about your Dr so I think I will say nothing!

Sounds to me that Plaquenil may be more appropriate than a mask but hey ho what do I know!


Hi, APsnotFab had the answer for you that sounds very sensible indeed. Fight for your Health!

Best of luck from Kerstin


You may also like...