Hi all, I'm posting on this web site because I have Autoimmune PA. I have recently had blood tests that stated I have the RO antibody positive.
And suggests Lupus or Sjogrens. They are both another autoimmune condition.
My GP. Ordered the tests because my whole body, skin, muscles and joints are so painful. Some days I cannot lift my arms, and it is agony to move my legs.
He said make an appointment for 3 weeks after the blood tests so that he could study them and study autoimmune conditions, as gp's don't know everything.
I thought how wonderful, a real doctor.
Well I saw him yesterday, and he had not a clue why I was there. I had to explain it all again. He quickly scanned the results, (not all of them, as there were 3 different tests).
And said everything was alright. I questioned him about the Lupus antibodies, and he said I tree is just a suggestion, and that he interprets it as ok.!!!!!!.
Scream,scream.
I even have the butterfly redness on my face.
If you cannot get past the GP, what do you do.
I'm very scared that I will lose the US ed of my arms and legs at some point.
I'm fed up with the battle with them.
I am vocal, and stick up for myself when needed, so maybe they are going to be awkward.
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Mannequin18
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I am not a medical professional so all I can offer are some thoughts.
Have you had the ANA test? I think this test is considered fairly accurate for lupus diagnosis.
I've heard a lot of mention in posts/comments on this group about Sjogren's. So to me, that seems to be more commonly associated with PA, but that's just what I'm seeing.
Are you sure you have a butterfly rash? They can vary quite a bit. And of course, they can occur without a lupus diagnosis.
Would your Dr be willing to refer you to a rheumatologist?
Mostly, I'm curious how much B12 you're getting. If you aren't getting the amount that your body needs, it will be very difficult to distinguish symptoms. It's taken me years to narrow down how much B12 it takes to keep me running.
I'm sorry you're having to deal with all that. I know it's frustrating. Keep on taking care of yourself and try more B12 if possible ❤❤❤
Hopefully getting more frequent injections will help.
Hmmm...that is just odd that your Dr was so dismissive. Maybe next visit with him his head will be in it more and you can get him to investigate some more. I'm sure you've read plenty online about this all but here is some more info that is fairly detailed regarding the ELISA results. I know it's easy to write, but do try to keep positive thinking!
I don’t think a GP should ignore a blood test that indicates possible Lupus ( or anything else for that matter) Perhaps get a copy of your blood results and post on Lupus forum here ? I would also write to the practice manager, stating how dissatisfied you were with the consultation. Don’t be emotive in it —- pure facts. As a final sentence you expect an appointment to be made with a dr sufficiently knowledgeable to discuss your results and either prescribe treatment or refer you to a specialist.
Correct treatment is your right, not something a dr can offer or withhold on a whim.
Thank you. I have only been at this practice for just over 2 years, and it has been an uphill battle to get anywhere. They stopped my B12 injections this year because my levels were high. I armed myself with information from here and wrote to the practice manager. After a battle I had them reinstated.
Hi Mannequin18. I'm so sorry that your having problems with your GP and it's a bit concerning that he has simply dismissed your positive RO antibodies. (Note from one of your replies below that you've also had a positive ANA - dismissing two,positive autoantibody results...hmm 🤷♀️🤷♀️).
And just wondering if he gave any reason for your ongoing symptoms (i.e. is your hypothyroidism under control?). Or perhaps he's dismissed your symptoms too?
As you probably know, autoimmune conditions can occur in clusters so once you have one, it's more likely that others will occur - and you already have two that you know of (PA and hypothyroidism - most often caused by Hashimoto's - another autoimmune condition).
So, first...here's something about Anti-Ro antibodies...
Anti-Ro (SSA), anti-La (SSB) and anti-RNP antibodies are less specific markers for the presence of SLE, as they are found in other autoimmune rheumatic disorders [41]. Anti-Ro and anti-La are most strongly associated with primary SS but do occur in lupus patients, especially those with photosensitivity and subacute cutaneous lupus. Anti-Ro and anti-La antibodies can cause neonatal lupus syndrome including congenital heart block (CHB) in children born to mothers with these antibodies (see Recommendations for monitoring of SLE section) [64, 65]. Anti-RNP antibodies are found in overlap conditions such as MCTD [41].
And here's a link to the full Lupus (SLE) diagnostic and treatment guidelines from which the above excerpt was extracted. The guidelines will give you some idea of the range of tests a rheumatologist will do (and there are others) and also give you some idea of what a rheumatologist will be looking at to make a lupus diagnosis. Also worth searching for the rheumatology guidelines for Sjögren’s syndrome...and be aware that there are many other autoimmune conditions that a rheumatologist would want to rule in or out too.
It's worth noting that anti Ro antibodies can also be indicative of other autoimmune conditions and it may be that you have other auto-antibodies that your GP is unable to test for.
Most GP's have limited knowledge about about autoimmune diseases and the tests available to a GP's are quite limited. So when auto-antibodies appear in tests GP's do it is usual to refer to a rheumatologist for more extensive testing - most especially if you have raised auto-antibodies along with associated or unexplained symptoms....and you do.
The obvious thing here is that you are obviously not okay!! And if your GP is unable to explain your symptoms, then he should want to investigate further - via a referral to a rheumatologist. And you are quite within your rights to request this.
So...some suggestions...
a) put together some information (see below for tips) and approach the same GP again with your symptom evidence, explain your poor quality of health, and make a firm request to be referred to a rheumatologist. Or...
b) is there another GP that you can see...(present the same evidence and argument).
If the above fails, write to the practice manager with the same information, explain the impact on your health / quality of life, that these issues are not being addressed, and that you are requesting referral to a rheumatologist so that the presence of autoantibodies and potential autoimmune disease can be further investigated.
Another option would be to change GP surgeries (if possible).
Some prep tips...
1. Make a list of ALL your symptoms (it may be quite long but where potential autoimmune disease is concerned, everything will be relevant).
2. Keep a daily symptom diary so that you can monitor symptoms (some may come and go and it’s a good way of monitoring what’s happening).
3. Take photos of any rashes (especially the facial one, when it occurs), swellings, bruises...or anything that's at all visible
4. Think back over your medical history and make a list of anything that's occurred in the past - no matter how long ago (sometimes these things are connected and can shed light on an underlying autoimmune condition( i.e. tendon issues, frozen shoulder, frequent infections (urinary, chest, sinuses etc.), mouth or nose ulcers, hair loss, anaemia...
All the above may help 'persuade' your GP to make a referral and will certainly be very useful information for a rheumatologist.
Also - ask the surgery to print out your blood results (with reference ranges) so you can keep track and see what the results actually are - doctors often say things are normal when they’re not! Save these for future reference and get all copies of future blood tests so you can spot any changes in the future. You have a legal right of access to these results so we’ll within your rights to ask.
If it's any help, I know how frustrated and scared you must be...especially when you feel so ill and your GP just dismisses you.
Happened to me too...I have an autoimmune condition (Lupus)...and it took a great deal of perseverance to get through the GP system and then find a decent rheumatologist. So please don't give up hope, have the courage of your convictions, and keep persevering until you get the care and attention you deserve.
Also worth saying that autoimmune conditions can somethings be fiendishly difficult to diagnose...and that's precisely why you need a specialist referral to a rheumatologist 😉.
Autoimmune 'stuff' is a bit off topic for this forum (though unfortunately not for me 🥴🤣🤣. If you have any more questions about all things 'autoimmune' (baring PA), here's an HU forum where you can get support...
It's the LupusUK forum but people there have a large range of autoimmune conditions and there are some very knowledgable folks who are always happy to help with support and advice.
Very best of luck with your GP. Let us know how you get on xx
P.s. forgot to say...some general rheumatologists are not too good at autoimmune conditions other that rheumatoid arthritis or PMR, so may be worth doing some research to identify one who has a specific interest in lupus/Sjögren’s etc., and ask for a referral to that consultant (again, it's your right to do this). Or ask for referral to a Lupus Centre of Excellence (if there is one near you). You could also post on the LupusUK forum and ask for consultant recommendations in your area (ask for response via Personnal message). Good luck xx
Thank you so much for taking the time to write such a detailed letter. Loads of really good information. ( I love this forum).
The ANA test result was 2.5. With reference range [0.0 - 1.0]. And says above high reference limit Positive.
And it says possible Sjogrens or Sub cutaneous Lupus.
He didn't even read them. Also my red blood cell count was above high ref limit. It always is. He said it was okay. And I hadn't had a B12 injection. My national count is 0.14. - 10*9/L. Ref [0.0 -0.1]. Intrinsic factor antibody is 51 AU reference range [0.0 - 25.0] above high ref limit.
There are many more all above reference limit. I tried to print them out, but could only print the first page, it would not let me print the whole thing.
I will take your advice and ask to see someone who knows about autoimmune conditions. I will write to the practice manager, as it would be too long a wait for an appointment, and it seems my symptoms are escalating.
I have moved a lot in my time, even abroad, and had many surgeries, many doctors, but these are the worst I have ever come across.
They do send me for tests, but never act on the results.
I'm dumbfounded.
Sorry for the long rant, and thanks again for your reply.
For this GP to miss the blatantly obvious - Positive Blood Test Results - not even taking the time to read them leads me to wonder if he/she is not well. That might well be another concern to bring to your Practice Manager. It’s a dangerous oversight on your GP’s part. Other of his/her patients could be suffering similarly. All the very best as you move forward in your investigations.
I think it is a good idea to write a letter. Letter could contain symptoms, test results, relevant personal and family medical history, extracts from UK documents if you're in UK, requests for referral to specialist etc.
If you're in UK , it's possible that there are regional guidelines for your area on how to diagnose/treat/ manage lupus. Worth trying to track these down and compare them with national guidelines.
I know that local guidelines for PA in UK can be out of date and do not always match what is in national guidelines, same may be true for lupus.
British Society for Rheumatology Lupus Guidelines (published 2017)
Have they considered testing you for Hughes Syndrome ( also known as Antiphospholipid Syndrome APS)? It is sometimes associated with lupus type condtions
Thank you for your reply and details. They did 3 separate tests, which tested for lots of things. I have tried to print them out, but I can only get the first page with very little details on it. I am having my B12 injection at the surgery tomorrow, so I will ask then. I have also ordered B12 samples to si. But they have not arrived yet. I plan to si monthly, but still have my 3monthly injection at the surgery.
I really don't think I am getting enough B12, even though my levels are always high.
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