Can NHS GP's order an ENA Panel?

[Chancery]

Hi, I have an, as yet, undiagnosed autoimmune issue (I believe). I am waiting for a rheumatology appointment (been waiting since September last year) and have suspected psoriatic arthritis then dermatomyositis. But recently I've been wondering if I don't just have plain old Sjogren's Syndrome.

Because my worst symptom is muscle pain (then joint pain to a lesser extent) I've tended to dismiss Sjogren's, but the truth is I have every single symptom in the Sjogren's checklist. Itchy sore, dry eyes, ears, skin. Bouts of very dry mouth, but am constantly thirsty even when that's not active. Permanent cough, breathlessness, weakness. Photosensitivity and permanent rashes round my eyes and on one nipple which were very bad in the summer months (on collar bone too). I also get a very sore itchy vulva area which nothing helps. I could go on, but like I say, I have them all.

Trouble is, I've never had a positive ANA test, or any positive antibody test. And my question is, could I get my GP to do an ENA panel, or is this something that only a rheumatologist could/would order? I read that they are usually only ordered if you have a positive ANA test, but I wondered if it might be more useful? Although I suspect not without the positive ANA first...

Incidentally, I have a neurological condition of some years standing, trigeminal neuralgia, and I used to get PIP for that, but they took it away from me a few months ago and I have had to sign onto Universal Credit. I am 63 years old and haven't worked for years. The irony is I feel it could be good for me, but I am SO tired and sore all the time I just don't know how I will cope with trying to work. I've been getting fit notes for depression but I don't want to go on doing this because, ironically, I find it depressing. I REALLY want a diagnosis but I don't want to keep going begging for more tests.

Soooooo… not sure what I'm asking here, but maybe is there anything a GP could do to help diagnosis while I'm waiting, and also does anyone else get absolutely trashed with pain and tiredness?

[MichelleHarris]

Hi Chancery, theres very few on this site. The Thyroid and Pernicious Anaemia sites are full of very knowledgeable people. I think they leave those tests to a Rhuem. I dont know why GP’s dont do them. Ironically I have tested negative on ENA panel but specific antibodies test as sky high. So I dont understand that. An ultrasound scan would show Sjogrens x

[Chancery in reply to MichelleHarris]

Hi Michelle, thanks for replying. An ultrasound would show Sjogren's? I've never heard that before. What, exactly, would they ultrasound? And what would they be looking for in it, in terms of diagnosis?

[MichelleHarris in reply to Chancery]

They would be looking at the throat area, up to your ears. They look at the salivary glands and lymph nodes but at the whole area. Sjogrens can be seen on U/S scan x

[Chancery in reply to MichelleHarris]

That's really interesting information - thanks. I imagine though if you don't have salivary problems (or it's not your chief complaint; mine is predominantly eyes, rashes and muscle/joint pain)that might not be very helpful?

[MichelleHarris in reply to Chancery]

Yes thats how it was with me for many years. Then my ears started itching like mad for a couple of years. Then I went hypothyroid and then lymph glands all swollen. Wish I’d have known I was all auto immune attack, I would have gone gluten free much sooner x

[Chancery in reply to MichelleHarris]

Did gluten free help you then? I know non-coeliac-gluten-sensitivity is being recognised much more nowadays - always having been considered an imaginary illness before. It's a curious coincidence that you mention it, because for at least 6 months, maybe longer, I've been in a bread decline! First, I stopped eating wholemeal because I was disliking it so much, tried various white breads, then slowly but surely just started skipping it. I find I don't like it very much. I've had various wheat-free experiments over the years and always felt a bit lighter without it, but never been sure whether that was just because you tend to eat more 'healthfully' without it, or whether it was genuinely a wheat issue.

I've been tested for celiac disease a few times but it's always negative. I have been wondering though if my growing dislike of bread is my body trying to tell me something!

P.S. In my early to mid fifties I developed terribly itchy ears. I actually ended up going to the doctors about it, I was so desperate, but it was just the usual "not an infection, nothing wrong, we'll try syringing the wax out". In the end I cleaned them out myself with drops, but that made zero impression. They still itch from time to time, but it does make me wonder if that was my first/earliest symptom, although I had had an episode of bad eye rashes a few years before that, in my late 40s.

[MichelleHarris in reply to Chancery]

Yes I’m abdolutely sure you should listen to your body. I eat Emmer bread which is the oldest grain and gluten free. Its a healing bread. I get it from an artisan bread maker who sells it to a lot of Caeliacs. My cholesterol has come right down as has my antibodies in just 2 months. Im Gluten and Dairy free x

[Chancery in reply to MichelleHarris]

I'm implementing a lot of dietary changes at the moment. I might try and incorporate wheat-free for a while and see if it helps. It won't be hard since I hardly ever touch the stuff. Thanks for the suggestion. X

[UrsaP in reply to MichelleHarris]

Sorry to jump into this thread, but will Sjogrens show up on a scan if not in a flare? I can relate much to Chancery ’s symptoms, but think a flare that I have been putting up with for about 3-4 months is fading away. Seeing GP Thurs. If I am going to push her to test properly is there a better time to test this. I think, sometimes by the time the actual blood or other tests done, the problem has gone into remission, and needs to be tested urgently whilst in a flare, but don’t know if hat it right?

[Chancery in reply to UrsaP]

I sympathise, Ursa. During last summer I was covered in rashes: round my eyes, along my collar bone, round the back of my neck, my nipple and possibly my vulva. By the time I saw a doctor, in September (I had to wait 4 weeks; needless to say it prompted me to move surgery) I had the palest rash on one eye although most of it was still itching. Likewise, today, I went for my first ever mammogram (and an ultrasound) and the rash that had been still there, since summer, until about two weeks ago, is only apparent to me because I know what my nipple SHOULD look like. I actually had to correct the nurse, twice, and say 'the rash is still there, you can see it after a shower, it still itches" when she kept wanting to put down that it was "currently resolved". It's hugely frustrating that you can't see specialists when you actually need to see them. I've been waiting since September to see a rheumatologist and don't even have an appointment date yet!

[UrsaP in reply to Chancery]

Yes, that is a real issue, by the time we get appointments the fares have receded. Less likely to get positive readings. I notice my rash worse after showers and more permanent at the minute. Often under the skin, so can feel it even when can’t see it so obviously. Frustrating is the word.

[MichelleHarris]

I dont know the answer to that. I already started NDT so the flare was subsiding but they still saw it on the scan x

[UrsaP in reply to MichelleHarris]

No worries, just thought I’d ask. Sounds like scan and lip biopsy only way of being sure?