After two weeks of severe and increasing pain in my legs and three GP appointments my blood was checked and I was admitted to hospital with a CRP of 330. I was initially put on Prednisolone at 60mg and gradually my CRP score improved. I then went through months where the pain seemed to move through my body and I was also experiencing pain in my arms, shoulders and having severe headaches and was finding it difficult to walk.
After numerous blood test and scans over many weeks my diagnosis was suspected to be Giant cell or Temporal Arteritis but this was never confirmed as my symptoms didn’t completely fit.
Two and a half years on and my ‘condition’ is now well controlled with 20mg MTX. I am obviously very thankful for this but I do find it slightly frustrating that I have never had a confirmed diagnosis and my hospital notes always state that I have an undiagnosed inflammatory disease . In particular, it can be quite difficult when having to state my diagnosis when I need to give this information in writing and even for travel insurance.
I was just wondering whether anyone else is in the same position as myself.
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Hightower62
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This sounds familiar although my CRP has never gone that high to my knowledge - even with sepsis!
My situation is slightly different in that I’ve had 12 years of changing diagnoses rather than no name at all. I know I’d find it very difficult psychologically to have no name at all for such a long period of time. I’ve always felt that living diagnostic uncertainty is more hellish than anything - although feeling misdiagnosed has been very unsettling too. I can say this now from the vantage point of having very solid diagnoses of systemic sclerosis and Sjögren’s plus EDS and hypothyroidism - but it’s taken 12 years to get here. If I were to go abroad I’d have to state that scleroderma is my main disease as I’m seropositive but I was only definitively diagnosed this year with scleroderma.
Apart from anything else it’s good to be able to pin your colours to the mast from a support, research and treatment perspective - especially the support. And I’m far more confident being on these communities now. Would it be appropriate to ask your consultant for an umbrella term such as ANCA negative Vasculitis or maybe UCTD? At least then you’d be able to deal with insurance and such like? The Vasculitis communities seem full of people with unclear diagnoses as there are so many rare subtypes including GCA.
A friend of mine in NZ was hospitalised last christmas with high CRP and similar pain profile. She was finally diagnosed with Adult Onset Stills disease. Quite rare. She is on MTX and doing ok. But still problems with feet so now discussing whether a biologic would be better.
Thank you for your reply, I have never heard of this before and it has certainly not been excluded. I will definitely look into this to see if my disease profile looks similar.
I'm approaching my 8th year of being 'unwell'. I went from not having a diagnosis, but taking DMARDs, then biologics and now JAK inhibitors to having seronegative RA. My bloods have always been normal for inflammatory markers although I am neutropenic and regularly have a low Hb.
I changed rheumatologists last year, he doesn't agree that I have seronegative RA, and has changed my diagnosis back to inflammatory arthritis.
I found your repy interesting . Can you pinpoint what caused your neutropenia? My neutrophil count dropped so that I have mild neutropenis since being on biologicals and I am wondering if the medication is causing this. Thank you in advance.
I've had neutropenia at the beginning of being unwell, pre any medication. I'm occasionally lymphopenic and regularly anaemic despite taking a healthy diet. My rheumatologist says many people with rheumatoid diseases have blood anomalies such as neutropenia. It can be part of the disease process. He isn't worried about my bloods at all, my GP freaks out and rings for advice, always to be told nothing.
Thank you for replying so quickly, and I am sorry to hear you also have blood abnormalities . My rheumatologist isnt worried either . However I wish neither of us had blood abnormalities. It is in my nature to want to understand why and what we can do to put things right. Take care and thank you. Perhaps one day we will have an explanation and a cure.
Like you I do wonder why some of us have blood abnormalities such as mentioned. Blood cells are produced in the bones, we have an inflammatory disease process involving joints and bones I guess blood cell production isn't as it should be.
Hello, I empathise with you. Note my diagnosis is Adult Onset Stills Disease which for me manifests as RD. Diagnosed in 1979 aged 17, off RA meds and steroids by mid 20s except pain relief and limb supports/brace from time to time. Symptoms are ever present, joints always sore , stiff and immobile. I have other associated AI conditions, LS, IC and DC ( sorry I can’t remember the spellings today due to fog ). Anyway another member pointed your post out to me hence my contact .
If you read my bio you’ll see I’ve been unwell this year with still undiagnosed stuff although plenty of tests have been done . GP and hospital drs dismissive of Stills involvement which is irksome to me. If your car has a rusty exhaust you check and repair that before poking about in the engine for example. The waste of resources is sad when there’s a clear problem that should be addressed first. A bit naive of me to expect that I suppose when Stills is rare, more so in adults and we all know Drs don’t like it when we know our conditions better than them. I see another post suggests you join the PMR forum; I have found it very interesting indeed and lots of crossover symptoms with Stills. Lupus also has some similar symptoms. I’ve been doing a lot of research this year and it’s led me to consider Mixed Connective Tissue Disease maybe the cause of my recent malaise and increased pain levels.
Hi, thanks again for your comments. I am relying completely on the NHS and am waiting for my annual review which is now nine months overdue. When I enquired, I was told they are running at least twelve months behind with follow up appointments so that will be at least two years.
I’m not complaining as I am thankful that my disease is well controlled currently. However, it is frustrating as I feel as though I am in limbo and have numerous questions which I would like to ask a consultant in a face to face appointment.
In addition to yours, there have been some interesting replies to my post and some suggestions for conditions which I have not previously heard of. PMR is one which is of particular interest as shoulder pain and morning stiffness are both problems I have been contending with for the past few months.
Although I am not trying to self diagnose I feel it is good to try and find as much information to be as well informed as possible. If nothing else I will have some more questions to ask a consultant if I ever get to see one! 😂
To get diagnostic tests done today is a real battle for patients. The NHS is way behind medical care in other countries now . In my experience GP practices are not what they were before lockdown.in many cases we are being driven to go private if we can.
Yes, tests at private ‘companies’ that are off chutes of the NHS it seems. At the same time as NHS reduces their lists by sending patients to private clinics for cataracts for example. One assumes NHS end up paying their own staff to do operations in these private clinics as often you see the same eye surgeon as at the hospital!
Back in 2011, I was 47 and suffering painful neck, shoulder muscles, buttocks, hips and lower back. My gp was convinced I had polymyalgia. Rheumatologist was skeptical as it’s normally over 50, but 6 months later sighs diagnosed me atypical PMR. 3 months after starting steroids I developed severe jaw pain when chewing, burning temples, tender scalp, pulsatile tinnitus and tongue had vascular lesions and it would spasm. It was almost implied I was inventing symptoms. It took another 6 months to get a temple artery biopsy which was inconclusive from being on steroids 10 months. A medical adviser of the PMR charity seen my post re symptoms and pictures of my tongue, got in touch, asking what rheumy said about it, when I told her I was bring dismissed, she asked me to get gp to refer me to her 250 Mile away. I spent 4hrs in her clinic going through my history, giving blood for research and a special colour ultrasound, which confirmed the GCA. I continued under her care for another 18 month. She then said she felt there was more going on, and after X-rays said I had a spondyloarthritis, and referred me to a colleague who works with the AS charity. She confirmed AS, but had to refer me back locally for biologics. My CRP was never raised as high as yours. Unfortunately due to needing steroids for treatment, I now have adrenal insufficiency as the steroids switched off production of my cortisol. I should say I was also seen by prof Dasgupta who writes the protocol for GCA, he also did the colour ultrasound which showed the inflammation. As someone else suggested the PMR/ GCA forum is excellent. Hope you get answers soon
Thank you so much for replying and for sharing your journey with me. I do hope that I get a diagnosis at some point as currently I have an unseen illness with no name which is frustrating.
It's annoying not having a name. I have sero negative inflammatory arthritis....but you tell people this, they hear arthritis and ask if you don't just need a new hip or have you tried CBD oil. I get you need something for official documents but otherwise I'd be going with generalized inflammatory disease. !?
It's good you don't have that temporal arteritis it sounds awful
Hi Hightower. I was diagnosed with RA when i was 21. (I’m 52 now). I was lucky. I found out within a few days of being hospitalised. Eventhough it was way back in 1992. I was getting svere pain in my right big toe, left shoulder & i woke up terrified 1 morn. I couldn’t see out of my right eye. I thought i was going blind. My husband had to prize my eye open. It was very bad conjunctivitis. Later on it ended up being diagnosed as Iritis. (Inflammation of the eye). Over the yrs i’ve had loads of steroid injections in the eyes. 2 catarracts removed, a trabeculectomy where they make a slit in the eye to drain away fluid. I’ve also had permanent lenses injected into the eyes, as my vision was getting worse. I’ve since developed Glaucoma. I’ve been a Moorfields Outpatient since the beginning. (I’m so grateful). I’ve also been having 6 weekly infusions of Infliximab for the past 20 yrs. After a couple of months of not having this miracle stuff, i can hardly walk. Again. All on the NHS. I’m bloody grateful i don’t live in the States. My brother moved there & he’s always saying how lucky i am to have the NHS too!
I’m sorry i’ve gone on a bit! I know it must be frustrating not having a definitive diagnosis. I remember having your symptoms in my head a few yrs ago. I was getting permanent headaches. They lasted a whole week. I went to my gp. He looked concerned. Rang my local a&e. Then shook my hand & wished me luck. Told me to go straight there! Made me bloody nervous. They did loads of tests. They were wondering if it was Temporal Arteritis. In the end. It was my sinuses!!!! I was so relieved. Then over the yrs, i’ve had other symptoms. They’ve done tests for Sjogrens. I was told it’s quite hard to diagnose. Can take yrs.
All my yapping! Just wanted to wish you luck & hope you get the help & relief you need. I always say this. This is a good place to come & let all your frustrations out. We know what it’s like to have chronic longterm health crap!! Good luck x
Thank you for your reply and for sharing your journey. It is sad but at the same time interesting to read about other peoples struggles as it helps to give some perspective.
It always amazes me when I hear different peoples stories as there are so many wide ranging and complex autoimmune conditions and a multitude of treatments and medications. These illnesses can also strike at any time and any age and it seems that no two peoples stories are the same.
Hi. I’m sorry to hear about what you’ve gone through. In 2019, I return from a trip after six hours on a plane and had a swollen ankle that would not go down. I then started to have painful swollen joints: wrists, elbows, shoulders, knees, everywhere. Several months later, I wasn’t seeing well in my left eye and it gradually worsened to where I couldn’t see. I went to the emergency eye clinic and was seen by ophthalmologist who diagnosed me with a swollen optic nerve (optic neuritis). Multiple MRIs, CAT scans (including one for my brain because I was having severe headaches) , EBUS, PET scans, etc resulted in finding inflammation in all of my organs except my heart. Large doses of Prednisolone at 60 -80 mg brought the swelling down. Meanwhile, I gained 50lbs! After 2years, I was finally diagnosed with Sarcoidosis . Four years later, I am on weekly injections of methotrexate, infusions of Infliximab every eight weeks-and am being weaned off prednisolone (!), I am now on 1.5 mg . Unfortunately, a skin rash (like goose bumps all over has developed). Amazingly, the swollen optic nerve(Optic Neuritis) is gone! The excellent RA team at Kings College and ophthalmology team at Queen Mary in Sidcup have helped me get back on my feet. I I understand that it’s the not knowing exactly what you have that’s the scariest. As long as you’re being medically treated and you feel better, try to focus on that. Hopefully they will come out with a complete diagnosis. Wishing you all the best.
Thank you for your reply, your story sounds similar to mine except you have unfortunately had more to contend with. It is reassuring to know that you eventually got a diagnosis.
Hi K9910. I’ve just read your reply to Hightower. I thought i had it bad when i was diagnosed with RA & severe flare ups of Iritis & Galucoma, at the age of 21. (31 yrs ago). What a way for you to get symptoms. After quite a long flight? Having loads of medical apps can be very tiring & depressing. I’m so grateful to be under University College London in Euston & Moorfields Eye Hospital, Old St. I’m lucky in both hospitals. They’re only a bus ride away. I’ve met people that have come as far as Cornwall & Liverpool. I’m glad your scary eye problem was sorted. I feel i’ll be under Moorfields forever & UCL. But i’m just so grateful for the NHS. Hope you can ‘enjoy’ Christmas as much as possible. Hope Santa brings you something nice! X
I don't have any further advice or information to give you, we have such a great lot of people here replying! But I do have something that might help get your thoughts together when asking for a diagnosis.
Jonathon Tomlinson is a very thoughtful GP in a part of London that has a lot of deprivation. He writes really interesting blog posts, that bring together how patients feel about things, and how the GP feels.
His most recent one talks about the importance of diagnosis, and the identity and power it brings. It is a long read, but worth it.
Maybe you could get some ideas from it to help word your next conversation with a doctor. I think often doctors don't realise how important it can be to have a diagnosis. Yes, there is uncertainty in medicine and diagnoses can change, but for patients a diagnosis can be very important for completely different reasons than a consultant has.
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