hi, first of all I apologize if it is not written grammatically, I'm from Croatia. I am 26 years old.I have a rash on my face, nose, cheekbones, I picture rashes, sometimes they are on my body as a rough itchy surface. joint pains, swelling, morning stiffness for two hours. pain in hips and shoulders. painkiller injections cc every month. temperature up to 37.6°C daily. chest pains and shortness of breath. high blood pressure, I've always had low blood pressure. the edges of the nails are swollen, inflammation at the root of the nail, furrows on the nails. I often wake up with swelling around the eyes. it started after giving birth (2.5 years), first it was the thyroid, but now everything is fine. then inexplicable heart palpitations started, then tremors, tics. migraines (now they are ok), loss of reflexes in the legs, hyper reflexes in the hands. brain mri 1 lesion (ms off) rest of the spine osteoarthritis. Ana positive 1:160 (I know it has no significance), everything else is fine. the blood count oscillates as when. diagnosed with Rayaud's syndrome. I'm going to take the antibodies again next month. advice?
no diagnosis, help: hi, first of all I apologize if... - LUPUS UK
no diagnosis, help
Hi Tea
Your English is perfect! More importantly, I’m so sorry you are so ill. If you’ve a positive ANA it is of significance bearing in mind the symptoms you have. It all ‘should’ be enough for treatment as diagnosis isn’t based on blood tests alone, a doctor should take everything else into account. I used to think that you needed most of the blood tests to show positive to receive a diagnosis, but that isn’t the case. There are many types of and Lupus or associated autoimmune diseases and so your blood results may not show everything in one go. Definitely get your blood retested, but you do need some treatment or advice from a specialist now, regardless of those results as you are so poorly and cannot continue like this. They may also do more specialised blood tests and scans etc to aid a diagnosis, plus take your photos to show them of any rashes, bruises etc (sometimes they disappear the day before an appointment).
Also, Lupus UK has so much brilliant extra information which I found invaluable both before and after my Lupus diagnosis. Plus, this place is fab for learning so much too, so I’m pleased you’ve posted here. We’ll help you all we can here too, so ask as us much as you need to.
Take care ✨
yes, I know I need to see a rheumatologist. I went to a private doctor, he says he can't say anything because the blood tests show nothing. regularly, it's literally impossible to make an appointment, the deadline is the 4th of May 2023. I don't know what's happening, but it's getting very difficult, I'm constantly on sick leave, I haven't worked in months. fatigue and pain are terrible. I haven't been working for months, I'm on sick leave, it's terrible that I can't function. there are very few rheumatologists in Croatia and it is difficult to get an appointment.
You said you are ANA positive though and whilst that alone is not a diagnostic marker, given the picture of your symptoms, all put together it gives a picture. However, it’s not always straightforward to get a diagnosis in the UK, where many also struggle to get the help needed.
You’d mentioned a deadline of 4 May - is that for having a blood test or appointment?
Am I right in understanding you’ve had a brain scan which showed one lesion and they’ve said it’s not MS? Plus, your thyroid - is it ok now just because it’s being treated or is this something that somehow resolved itself? If you are being treated for under/overactive thyroid then that could be causing you some of these issues if the medication isn’t working as well as it should.
Some of us on here have had to fight to get treatment. Sometimes it is a case of having to get all the evidence/information in order ourselves and present it to the medics.
These aren’t questions I’m asking you to answer here, they are things for you to consider/do to help you build up as full a picture as you can. You may have done this already. Please bear in mind that I’m not knowledgeable as to your medical system:-
• Keep a detailed symptom diary each day. Note your symptoms and severity and whether they are constant, whether they come and go. Plus add any other details, such as menstrual cycle, if you’ve been in the sun etc, if you’ve taken medication, caught a virus, had alcohol. Sometimes, we have all these symptoms happening all at once and a Doctor will focus on just some of them they feel most important, to rule out acute illnesses. I’m not suggesting you take the diary for the Doctor to read as they’ll have no time. Once you’ve filled this in, over time, you’ll maybe see patterns (I look back over mine once a month). These patterns are helpful. From my diary it showed a clear pattern from my symptoms that start a Lupus flare for me, how the symptoms in a flare progress, that sun exposure is a factor, that some of my migraines are hormone related and that some symptoms I’d not considered before, are part of a flare - this type of thing. This is hugely helpful diagnostic information to give to a Doctor who wouldn’t have the time to do this. You can then set out some facts that make it easier for the doctor, when it happens, what happens, how it progresses/in what order, how long it lasts.
• Photograph rashes, swollen joints, eyes - anything visible. Note down in your symptom diary how long these last, when they happen.
• Do your rashes become worse after you have been outside/in the sun. Are they worse when certain other symptoms are worse. If this is the case then it’s more evidence for the doctor.
• Also add temperature into the symptom diary - does it happen at certain times of the day, is it worse when other symptoms are worse. Again, it’s trying to find a pattern.
• Have you received a diagnosis for your joint redness and swelling plus the nail bed swelling and redness. I note you are receiving pain relief injections. Which joints are affected, do they affect both sides at the same time, what is the pain like. These can also give clues depending on which joints are affected. Are your joints permanently swollen, or does this happen as a pattern along with other symptoms.
• Has the doctor said what they think IS wrong with as you, other than Raynauds. As if you’ve Raynaud’s already, autoimmune diseases like company and you could easily also have another one. They’ve ruled out things but I’d hope they aren’t waiting to diagnose on just blood work alone - as anyone with Lupus doesn’t always have all of the blood markers.
• Did this all start after your pregnancy, was it slow to start/sudden, are the symptoms increasing over time.
• Your blood pressure suddenly increasing, can they advise why it is happening, is it thyroid related. Same for chest pain and palpitations. If you can get a dipstick urine test from your Doctor or if not - you can purchase a small box on Amazon - also photograph the result.
• In the UK, when doing antibody blood tests, a Doctor would also check your inflammation markers, full blood count, you also need kidney function etc and do a dipstick urine test too. A blood test to check complement levels would be very helpful too - as low C3 and C4 can be indicative of a Lupus flare - mine has always been done at the hospital though. Together all these will give a better picture than merely antibodies alone, but having auto-antibodies tested are helpful place to start.
If I think of any more ideas to help, I’ll add in a separate message as it’s late now. In the meantime, there’s so many helpful people on here that will probably have far better ideas than me and they are sure to add messages to help you too.
✨
May 4 is the date for the regular examination. but if it continues like this I will have to see a private doctor again. thyroid disease was treated, hypothyroidism started during pregnancy, continued after childbirth and was not treated. and then I went to the doctor again and after about 6 months everything returned to normal and now I am without therapy, I just control my hormone levels. thank you for the guidance!
I really feel for you, it’s a worrying and scary time when you feel your body is letting you down and you want answers from a Doctor and they’re not helping. Especially since this has happened so soon after giving birth too, when it should be the happiest times. ✨
Hi tea211, sorry to hear about all the suffering that you are going through. I can relate to alot of what you are saying.I was diagnosed with Dermatomyositis over 8&half years ago.
This disease affects both your skin & muscles. It is an autoimmune condition, which is quite rare.
I would ask to have a skin biopsy done to determine what you may have!
I hope that you do find the right treatment for your condition to help with all the pain and stress that you are presently going through.
Please keep us posted on any findings.
Wishing you the best of luck.
Take Care x
hi, thanks for the reply. with us, there is no such thing as a doctor who will give you an examination if you just ask for it. the system is malfunctioning. thanks for the advice!
Looks like your immune system is having a right go at you. Psoriasis atheritus pitting of nails etc sounds like to me. Are your knees and ankles sore when walking?
Hi. ankles and knees are fine. my ankles sometimes swell a little. and it appears on my nails after visible inflammation of the joints. I don't have that on the little finger of one hand. those fingers hurt more and the inflammation is greater (swelling and redness, stiffness), they are more pronounced there. report
Hi tea211. I just wanted to point out that the 2019 EULAR/ARC diagnosis criteria for SLE/Lupus only requires you to be ana positive at 1:80 or above. Diagnosis is then based on a point score system of defined clinical and immunological criteria. Who ever told you an ana of 1:160 is not significant, if you have other diagnosed features of SLE, is clearly not following the diagnostic criteria.
Been warned as many "General" rheumatologist are attempting to diagnose/treat patients without sufficient understanding. You are best to see a CTD Specialist rheumatologist. There is good evidence of this happening in the UK & some of us are trying to change this.
My advice is that you should look-up the diagnostic criteria for all the major CTD's - SLE, mixed connective tissue disease, Scleroderma, polymyositis/dermatomyositis, Rheumatoid arthritis, & sjogrens syndrome. See which criteria you have diagnosed. If you have a number from different conditions, but don't complete any, then look-up undifferentiated connective tissue disease criteria of Mosca, Neri, & Bombardier. Please be advised there is no universally accepted criteria for UCTD, but this is the most commonly used. Diagnosis depends on ana positive twice, 3 year onset of disease & signs & symptoms of a number of CTD lasting 3 years from the other CTD criteria.
Good luck & trust in yourself,
Sarah x
hi, thanks for your reply and advice. I read about the criteria and unfortunately I meet a lot of them. I think I made a mistake in going to the doctor I did. old doctor, old school. I thought she had more experience, she would know, and in the end it turned out that she was only looking at blood findings.
Unfortunately that is a common problem & it's what happened to me. If it was as simple as waiting for positive blood tests, them a GP would be able to diagnose it.
Sarah x
Ramipril and Lupus
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