Diagnosis Referral

[rareoldme]

Hi,

I’m hoping someone can relate. About 10 years ago I started with pain in my joints and muscles and had a very bad episode of pleurisy. Since then I’ve been back and forth to doctors with pain often being sent to A&E because the pain is in my chest. Every visit is the same. X-ray, ECG and bloods show nothing so I’m sent home with advise to take ibuprofen and told it’s probably pleurisy. It’s got to the point now where I stopped going and just suffered at home during the worst parts but I’m fed up. I can’t tell anyone I have something wrong with me without an official diagnosis and can’t access support so I went back to my GP and said “how many boxes do I need to tick before someone will say this is lupus”. I was told on one of my A&E visits I was borderline lupus and that was it. Anyone else had the same? Can the ANA sometimes be negative? I think it was when re tested. I’ve read on the Lupus website it doesn’t have to be positive for a diagnosis but from my experience doctors are more likely to look at a blood result than all the surrounding issues.

I’ve had flare ups so bad I’ve had to use crutches or a mobility scooter when I’ve needed to go shopping. I need to be able to tell people what is wrong and access support so I’ve said enough messing about. I’m not suffering through it anymore but also scared I still won’t get a diagnosis. People don’t understand how bad it is when I say something hurts and I struggle. Without a diagnosis they never will and I will never get any support.

Any diagnosis stories would help and if possible any advice for my rheumatologist referral.

Much appreciated

[Spanielmadlady]

Hi.yes I can relate.ive had breathing issues for 9 years ever since I had pleurisy in both lungs in 2014.ive also had all the tests,ended up in hospital etc even got sent to the North West lung centre where a Prof of respiratory said it was AI. Some consultants said I was asthmatic and asthma specialist and a chest specialist said I wasn't.i had a bad year last year with pleurisy.ANA can flit between positive and negative .some Rheumatologists will not see you with ANA only some insist on other positive tests like DS-DNA or compliments.whilst the majority with lupus have positive ANA a percentage of the population are positive without having lupus.both my ANA and DS-DNA were positive and it still took me 5 years to get a diagnosis my breathing deteriorates very quickly and so far the only meds that stabilise it are steroids so I'm now steroid dependent. Bloods don't always coralate with symptoms btw.

There is an 11 point criteria for lupus you may find helpful.you may not have lupus as there is alot of overlap with several other AI illnesses.

It is hard to get a diagnosis you've just got to keep on pushing .keep a symptoms diary ,photos of rashes etc.

Good luck .Best wishes SML xxx

[rareoldme in reply to Spanielmadlady]

Thank you for your reply. It’s so confusing when some want to see a positive test and others realise the bigger picture is more important. I’ve done more reading today and realise lupus nephritis is scarily apt for me. I have blood in urine every time it’s tested. Protein most but that’s hit and miss. I’ll have a look at the 11 point criteria. Thanks for that. I really want my kidneys to have a full check now all this is hitting home.

[Spanielmadlady in reply to rareoldme]

I have class v lupus nephritis. The only way to be certain is by kidney biopsy. I had one in 2018.rheumy doesn't look after my LN I have a kidney specialist who I see or speak to every 6 months.do they do your eGFR or creatinine when they do bloods ? Try not to worry yourself sick by reading too much.xxx

[rareoldme in reply to Spanielmadlady]

do you have to have dialysis? What type of food or diet is recommended?

[Spanielmadlady in reply to rareoldme]

No.i don't....not all ends in dialysis. They give me no trouble and have been stable since starting immunosuppressants in 2018.there are 6 classes each denote which part of the kidney is affected with class 4 being the worst.class v is in the membranes. I don't need to follow a renal diet but I use very little salt,avoid alcohol, potassium rich foods and carbonated drinks. How is your bp? as kidney issues can increase bp.x

[rareoldme in reply to Spanielmadlady]

I’ve not had it checked for a while but it was high. Really high. I was put on ramapril but I have issues in remembering to take tablets and lost the second half of my pack. I was feeling awful with heart palpitations and when I stopped them it went away. So I feel better not being on the medication. I keep meaning to have it checked but forgetting all the time.

[Spanielmadlady in reply to rareoldme]

That's no good as high BP puts you at risk of strokes etc.missing some meds can be dangerous.ramapril most probably simply didn't suit you and you just need to try a different one.i have high BP and take moxondine without issue. There can be alot of trial and error with meds ....especially lupus meds that take a long time to work. X

[rareoldme in reply to Spanielmadlady]

I will check my BP tomorrow. Thank you for the push. I’ve no excuse when I have a home machine. Just sick of back and forth to docs so I had to chose to push for a referral at my last appointment. They don’t like you mentioning more than one thing at once do they.

[A-r-c-h-I-e]

Lupus was diagnosed for me after I had spent some time In the sun and developed the famous rash all over my face which my GP could not deal with. Fortunately she arranged an emergency appointment with Dermatology at GRI and the rest is history. My Dermatology Consultant is very understanding &listens to problems. I have a list of autoimmune disorders which are debilitating. Good luck

[Krazykat26]

Hi rareoldme 🤗Welcome to the forum. You'll find everything you need on this site about lupus and other autoimmune conditions. You're in the right place..this is a supportive community and there's no such thing as a stupid question. We all help each other 💐Firstly I wanna say you're not alone..lupus has one questioning ones sanity even after diagnosis. The weird n not so wonderful things that happen are often bewildering n overwhelming. We understand.

Even if you don't have a diagnosis yet u can still apply for support. If your mobility and capabilities are limited u can still apply for govt help. Citizens advice is a good place to start. The reason that I say this is because I didn't have a diagnosis when I applied for ESA n then PIP.

You might have had a look at the criteria by now so I would suggest that u record ANYTHING that matches. For example any rashes, fatigue, periods of confusion (brain fog), anxiety n depression as well as your physical issues.

If u want to find a rheumatologist near where you live u can ask here. There are also lupus centres of excellence dotted around..Lupus UK would be able to help there if u ring head office..they are very supportive.

[rareoldme in reply to Krazykat26]

thank you for your reply. I wouldn’t have thought about contacting Lupus UK or a centre but I will look into that. I was refused PIP a while back. I applied based on my spinal arthritis and they refused. They said they believe I am capable and if I wasn’t I would be on very strong medication for the pain. Well I was but it made me sick so on that basis they refused my claim. They also said I was able to stand and move around well, appeared well dressed and made good eye contact, all on a telephone assessment. So they lied bluntly and there’s nothing I can do unless I fight which I haven’t the energy for. I may re apply if and when I am diagnosed with the Lupus we suspect. I’m trying to look at reaching out for help and support but when I’ve always been so independent it’s hard. And when some refuse support like the DWP it makes me wonder why I bother. But I can’t let them keep me down

[M0wnt in reply to rareoldme]

Hi, please just appeal the decision as I believe they always refuse at first due to so many people making false claims. I have heard many people say this and then they appeal and get it???

Keep trying. ❤️