I feel awful at the moment..just got off the phone with my GP..had facial rash that came back last month..its on/off..they repeated my bloods..and ANA once again weak positive 1:100..otherwise everything else is normal..
So GP said that's reassuring.. blah blah..
I kept asking how come I keep getting symptoms..eventually we agreed that I will keep on making a note of symptoms etc..at present.. no diagnosis..
I am angry yet keep telling .myself that it's ok.. maybe the GP is right ..its not LUPUS..but then the tiny voice says what is it? I get mouth ulcers and nasal ulcers..hair falling..joint pain..fatigue..purple toes when the weather is cold..yet dsDNA is negative...so so frustrated.. I am scared...do I need to get really poorly before they do something? Arghhhh
Sorry rant over!!!!
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lufibabe
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Hi, sorry to hear you’re not getting anywhere. It can be so frustrating! Have you asked your Gp For a referral to rheum considering your symptoms and positive ANA? Whilst they may not wish to call it lupus as yet, they should have UCTD in the back of their minds. I would email your surgery and put all of your concerns and request for a referral in writing.
I was referred in March 2020...saw the rheumy in Nov 2020..due to covid..at which point all my tests were negative and everything was quiet for me..apart from joint pain..which she said it was arthritis after xrays..she discharged me with leaflets of arthritis and fibromyalgia...With a weak ANA I dont think my GP will refer me back..
Have you had a full autoimmune panel run? Positive ANA are not really very specific to anything in actuality. They are positive in a good percent of the healthy general public and also elevated in many diseases other than autoimmune. A full antibody panel is far more helpful in diagnosis.
In my experience they really do like to hold off on many disease modifying drugs until organ involvement is present even with positive signs and symptoms and an official diagnosis. I am officially diagnosed with lupus and APS. I only take warfarin, aspirin and lipitor ( only got these after or because I had two strokes) not HCQ or any other lupus treatments because right now my organs and antibodies are acting as they should. So even with a diagnosis you would likely not receive much by way of lupus modifying treatment other than over the counter suggestions until you show more serious signs and antibodies.
Ask you GP how to handle the ulcers, raynaud’s hair loss and joint pain independently from a lupus diagnosis. All our lupus symptoms, other than serious organ damage like kidney and heart, really are in actuality very common occurrences in the GP so not really all that specific to just connective tissue diseases. Ask your doctor to help you treat your symptoms rather than focusing on a name or cause.
Symptoms resolved is really what you need and he should be helping you achieve that.
My bloods are always negative. Over 20 GPs dismissed my symptoms all because my ANA was negative. I moved around alot so it wasn't just one GP practice either.
In my opinion you know your body best. If you think you need to see a rheumatologist then push for it or can you go private? Not ideal I know but if it helps get a diagnosis it's worth it?
As for treating symptoms. I used to have about 7 mouth ulcers a week plus terrible fatigue and joint pain. I haven't had one ulcer since being on Hydroxychloroquine and my joint pain and fatigue are generally improved, although I am currently flaring after my jab.
I have never come across a situation where "a weak positive" is called "reassuring" especially when there are other official lupus symptoms present such as ulcers. A GP is not a lupus specialist. As with many in your position, a second opinion from a lupus specialist is often advised.
Thanks Lily77Yes I wasn't reassured at all..and I said as much to her too. She said its a wait and see...at present because everything is negative so that means you don't have autoimmune.
The rheumatologist dont want to know because in November 2020 everything was negative. It just feels I am going round and round...chasing my own shadow!!
The whole of yesterday and upto now, I have a mental battle raging in my head...I keep telling myself...
1. yes..you have symptoms but you can do soemthing about them...ulcers use difflam and flixonase- prescribed by oral medicine
2. Rash- keep using the sunscreen and stay away from the sun as much as possible
3. Fatigue...pace yourself..deal with it
4. Joint pain- I am used to pain...been suffering for over 4-5 years now...part and parcel of my life
5. Hairloss- ???
6. raynauds- its warm at the moment so no symptoms
then...the other side keeps saying....LOL...after all these symptoms...they say No AUTOIMMUNE!!! laughable!!
And the battle in my head continues....
I have to be patient....and get really ill before someone will do anything for me...Reading from posts here in this forum..I can see that many many of you have been through similar situation...it takes a long long time until you get a diagnosis....Patience I guess...however it makes me sad and upset and if i was to say this they will put me on anti depressants!!!
Negative bloods with SLE really means nothing. It doesn't exclude the disease at all. Can you ask for a second opinion at a centre of excellence for SLE?
I agree with all the comments above just because your gp and initial rheumy cannot label your illness, doesnt get away from the fact that you are ill and need treated. I agree with Happytulip, ask to be referred to a centre of excellance , its worth the travel. You can google your nearest one.
At the end of the day your gp sees you for what ten minutes and dismisses you, you are living with this 24/7 and need answers and treatment. I am sorry you are not getting it. Good luck M x
I am exactly the same situation as you so I totally empathise with you I feel like I’m in a battle to get a diagnosis how much iller do I have to be before they want to take me seriously I have chronic fatigue, joint pains hair loss chronic mouth ulcers rosacea rash and I have had to beg to see a rheumatologist because my blood test was not positive but showed raised anti smooth muscle but no one seemed to know what that was!
Feel for you with same experience , many symptoms, nothing in bloods and yes when I said I’m not happy it’s said I’m depressed. I don’t know what it is but I feel some sort of disease As same symptoms recurr and some worsen when returning and some just not gone. My symptoms acknowledged but not treated other than treating pain and skin myself and their answer is they don’t want to give me drugs as they don’t have the answers and don’t want to cause more problems 🤷♀️ Hydroxychloroquine did help me long ago but they stopped it. Often wonder would these symptoms not be better treated again, I would be happy to try but they will not 🤷♀️Journey continues.I wish you luck in finding help , luck being operative word it seems. Take care 🙏x
There are many other autoimmune diseases your symptoms could belong to and I know UCTD has been mentioned so I would start with that idea rather than focussing only on Lupus. If you’re feeling rubbish much of the time with these symptoms and positive ANA then they should be concerned rather than reassured?
Why doctors think it should be reassuring to feel so unwell with no explanation or treatment plan is something I just will never understand tbh - never have.
I can only suggest that you try to see a different GP if possible for a fresh overview. You could ask for a referral to dermatology if your skin is a major problem for you. Sometimes other specialists will have a clearer overview than Rheumatologists as they take their cue from what they see and understand about your skin manifestations rather than only focus on bloodwork.
My ANA has varied from negative to equivocal to strongly positive back to always weak positive like yours now. I finally showed a very positive antibody for systemic sclerosis early last year which explained the unusual pattern of my ANA.
I learnt from more from a scleroderma forum than from any doctor about its likely significance - given that I already had lip biopsy positive Sjögren’s, high immunoglobulins and high inflammation markers always plus Raynaud’s and gastroparesis and the hallmark little red capillaries spots and now this highly specific antibody.
My lovely rheumatologist (8th in ten years) calls it Overlap CTD with emphasis on Sjögren’s (no longer classes as primary or secondary or referred to as seronegative). That suits me fine as I do have a very MCTD (mixed connective tissue disease) set of problems. We choose not to focus on scleroderma because I don’t have the skin tightening or nailfold capillaries changes. But we both know that it’s probably what is evolving in my digestive tract as this is my most destructive and progressive problem.
It’s taken ten years for me to find a good rheumatolgist who isn’t only focussed on bloodwork. Hang in there and trust your gut instincts above all x
Hi, would you mind telling me more about the little red capillary spots you mention here please. Where do they show on your body, all over the skin or more marked on legs/face for example? I have blood red spots on arms, torso and legs but also have a separate rash on legs all over that looks like goosebumps but not raised, my daughter has the same, cosmetically these don’t look nice but neither of us know what they are? As for the pin prick and larger blood filled spots I was told in AnE they could be something potentially quite harmful but she couldn’t remember what they were called, I offered pupura and petechie and she said it was neither of those 🤷♀️
These ones are called dot blot or matted telengecstasia and mainly affect people with systemic sclerosis or MCTD. It’s usually face, neck and hands they affect but mine seem to get same internally as well judging by baffled reports. It’s vascular. I’ll try to attach a pic showing you ones on my hands if I can. Usually associated with secondary Raynaud’s.
Thanks. They don’t hurt at all and are always there - same on my face. But my finger pads, palms and arms do hurt horribly when my Erythromelagia is flares each morning - sometimes worse than others - and this photo was taken during a flare to show my rheumatologist the burning finger pads not the spots - which she told me last year were telengecstasia of CTD. You should be able to press them and they blanch whereas petechiae and purpura don’t. I get both but the petechiae comes and goes less often now.
Have you looked into folliculitis for your rashes? X
Hello, I also have MCTD and the lupus nurse was so quick to discharge me in the lupus clinic all because of blood tests, however the consultant I was under said NO due to my symptoms. The day of my appointment I was unwell which clearly could be seen by anyone. What is most frustrating is that I had to wait years of feeling so unwell and referred to so many different clinics like parcel parcel..
Hi, so sorry hear about your journey, it sounds very similar to mine.5/6 years ago I suffered facial disc shaped lesions, bald patches, thinning hair, joint/muscle pain and extreme fatigue.I was referred to dermatology who biopsied my lesion and found jesnners lymphocytic infiltrate (half of medics relate this to lupus and test think it’s independent..confusing!) then I was referred to rheumy. All my bloods were negative apart from very low vitamin d. Had several appointments back and forth explaining symptoms but all Ana tests were negative. I had a new gp who I went to see during a bad flare and he organised specialised bloods which were never done as I was ana negative. It came back with smooth muscle antibodies to which I have had to repeat the bloods 12 weeks apart to confirm autoantibodies were still present, they were. I’m just now awaiting next step to see hepatoligist for possible autoimmune hepatitis but my liver function tests were normal so these antibodies may be due to something else. I’m still none the wiser and when I think I’m step closer it seems there’s still long road ahead. I was just grateful to my gp for ordering these tests as as consultants couldn’t offer me explanations with normal bloods. It’s a long road my friend and I hope you find answers xx
I just wanted to say that I totally understand. After 12 years Post my initial Lupus diagnosis I am no further forward with a definitive diagnosis. It is frustrating, soul destroying and you feel uncertain about what is ahead of you. All I can advise is to keep speaking to your GP, keep photos of rashes, swelling, ulcers and a diary of symptoms however trivial you feel they might be. I wish you the very best of luck xxx
Such good advice CecilyParsley, it took me 17 years to get a diagnosis unfortunately. Now i keep a diary, i take photos of rashes , I have control of my meds and understand them.. I changed GPs to a more empathetic GP who understood lupus ( this was a life changer) and just recently with the help and support of this group, thank you , and another good GP i have changed Rheumy successfully after being very unhappy with my treatment. I hope some of this helps others. You can ask for a second opinion , M x
Your situation is difficult and I can imagine extreme frustration. There are few things that stand out for me aside from the issue of blood test results. Does your doctor think your ulcers, hair loss and rash are consistent with autoimmune disease? It seems to me this is very important to know.
I have had all three - and none is from my autoimmune disease. Lupus ulcers are distinctive, as is the facial rash and hair loss. If your GP cannot answer those questions, he should send you to a rheumatologist or dermatologist for diagnosis.
Your question is a good one. They like to diagnose these diseases as early as possible. But I can see why your doctor not feel he has enough evidence to diagnose you with a chronic autoimmune disease. The only drug they would give someone like you is Plaquenil, and even that has significant side effects. Your best bet is to get a private rheumatology or dermatology consult. From what people on the forum are reporting the wait is very long for consultations, and with a low positive ANA and no specific antibodies, your GP may not make a referral.
Hi lufibabe. I agree with the others here.you need to be seen by reimatologist. Lupus is one of many rheumatic diseases and only a specialist can identify and treat you.GP might not have enough knowledge.My bloodwork only showed once at very beginning ANA positive but not very high number but I had a lot of symptoms, was referred to reimatologist then to another one, also saw a private one.its all worked good for me cause being seronegative it's tricky and the doctors needs to believe your symptoms rather than blood test.
When I saw the rheumatologist my blood works were negative..I believe I was in remission..I never saw the rheumatologist again..not even to discuss my results..this was last year..I suppose due to covid they didnt give me another appointment..just discharged me after negative results..
From all the responses I have received, I guess I will continue to keep a record and when I have visible symptoms, I will insist on being seen straight away so that we can get some conclusive results..
Hi lufibabeYes I'm the same, lost in 'limbo land' I get most of the symptoms you describe plus a few more...
..originally diagnosed with UCTD met all the criteria along with weak positive ANA so was started on hydroxy.
When my bloods reverted to normal I was informed I no longer had a connective tissue disease & was discharged from Rheumatology - despite all my 'unexplained worsening symtoms'.
I'm still on hydroxy under the guidance of dermatology-but thats it! My sore dry eyes & joint pain have definitely improved since being on it for nearly 2 years now- but why would that be? if i have no connective tissue disease!!
My own mental health is at an all time low & I have allowed them to try & help me with their pills & counselling but nothing touches it. I'm sure It is all part & parcel of this horrible disease what ever it be.
What I think I am trying to say is - that we understand how you feel & we are all by your side to help & guide anyway we can💕
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