I am having difficulties with getting a diagnosis after 18 months of going to various hospitals and consultants all because tests are only showing mild elevations (except for lung nodules). Sadly and frustratingly I have also had more than 18 months of pain and symptoms and of course it is still continuing.
I was discharged from a rheumatologist in December because my joints weren’t visibly red and swollen but was told I had sticky blood but not allowed to call it APS. Because I continued to have persistent chest pain and sudden breathlessness I had to get referred back to hospital for chest and heart. Unfortunately both the consultants are annoyed with rheumatologist for not doing enough.
Anyway I have just had a small flare up with a non blanching rash, muscle weakness, spasms in my legs. Also after two years of joint pain my big toe joint has suddenly ballooned up with no redness. I am going to have another immunological blood panel on Friday at the GP but because I feel better I suspect it won’t show anything.
Sadly I have developed another lung nodule and a recent heart scan doesn’t show structural problems or inflammation but nothing was said about rhythm issues. But the hospital won’t do anything and in fact are probably going to discharge me off of outpatient monitoring. Yet I still have problems.
I am slowly physically fraying at the edges with all kinds of symptoms becoming persistent and entrenched but no diagnosis. I don’t know what to do because my health isn’t reliable enough for work but if I continue to complain doctors are going to treat it as a mental health issue despite visible physical symptoms.
Is it normal to go through this before diagnosis?
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RoseFlowerDew
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I'm sorry to hear you have been having difficulties getting a diagnosis. Sadly it is becoming more difficult nowadays. There are so many autoimmune conditions and Rheumatologists are in great demand. Maybe you don't have RA, but one of the other AI conditions such as Lupus or Vasculitis. While having your immunological tests, could you perhaps ask someone if you could be tested for one of these two conditions? In the meantime, maybe these websites might be helpful.
You’re quite right I did have markers for both vasculitis and dsdna but rheumatologist has dismissed them out of hand and I was discharged. I did have raised RF, CRP and changes to ESR but again dismissed. So I am not sure what to do when a rheumatologist discharges yet I still struggle.
On the vasculitis website you will find a helpline umber. You could ring and ask for advice on finding a consultant that specialises in Vasculitis. It's a very specialised subject, and I doubt if your GP would really know much about it. Hope this helps.
You have my sympathies. I too was repeatedly diagnosed by my GP and then rheumatologist with depression. It took 2 years to get a diagnosis of sero negative RA. I knew I wasn't depressed, but asked for a psychological referral, she confirmed I wasn't. Armed with her report I confronted my consultant, got re MRI'd and was found to have active widespread synovitis in my hands and feet. I'm now on biologics, happy with my treatment and have a letter from my consultant saying my treatment had be'sub optimal'.
Depression seems to be a default diagnosis if a somatic diagnosis is challenging. Keep going, keep asking questions....why do you believe I'm depressed ? Is there another possible diagnosis? What other tests might clarify a diagnosis....
Ask for a change of consultant. Report your care to PALS. Ask for help from NRAS.
I'm enduring the same thing but been 10 years. Get referred to local loony bin rather than them looking at how dmards relive the symetrical symptoms of pain and stiffness.
It must be very frustrating to not be listened to when you’re in pain. I was lucky because all the tests were conclusive for RA but it must be a nightmare when drs get it wrong.
I know you were not trying to be offensive and I don’t want to appear confrontational but as someone with bipolar, I feel a little upset about the reference to “the loony bin”. No need to apologise because I understand where you’re coming from, it’s just a little bit of an archaic way of talking about mental health. I hope you are getting helpful treatment now🙂
Sorry for your woes, it’s terrible not knowing what’s wrong with you. I’m surprised you weren’t given steroids with the CRP ESR and elevated RF. What else do you need to get some treatment!! I can’t comment on your lung and heart issues but I would certainly be trying to see a rheumatologist or even your GP ASAP to discuss your blood results re inflammation. All the best
Hi RoseFlowerDew
I am so sorry you arev experiencing these problems I cant tell if ito is normal but totally get where you are coming from..I could not believe how alike your situatiion is to mine -but mine has been going on 8+ years.I last saw a rheumatologist in november 2011 who did not address my bone/joint pain/deformities -b ut went on about losing weight and more exercise".this was the same consultant who diagnosed my Fibromyalgia in 2005-again after ten years of symptoms.So That has been an issue since 2011-doctiors refuse to accept that my weight gain (about 2 1/2 stone is due to the distension of my abdomen and not diet related or due to lack of exercise(back in 2012 i was able to take my dogs on longish walks but not now).I only manage small meals-once or twice a day.I have seen two endocrinlogists -3 years apart and both said it was not in their area -but no referral to another consultant ie rheumatologist,
Despite me complaining to GP's of joint/bone pain and deformities etc -mostly of facial/skull bones since 2015-one gp got it in her head that these were suddenly "phobic anxiety",have argued that with doctors ever since -I do not have health anxiety-and any metal health problems are thos realated to Fibromyalgia-confusiion forgetfullness/poor memory /poor concentration etc.
I hope you get a diagnosis soon -Iam still fighting to get a diagnosis and fed up with gp's been fixated with IBS-which was when i was being tested for ovarian cancer and when that came back as negative the gp assumed IBS which is what it said doctors assume if OC is negative.i have never presented with symptoms of IBS.
It is worth asking to be referred to a different rheumatologist - and collect all the evidence together yourself and present it calmly and persistently - the technique of 'I hear what you are saying but the evidence shows that the likely diagnosis is some form of auto-immune disease which requires treatment.'
First of all, and without intending to condescend you at ALL, you Poor 'ol Pop! I'm going to make some suggestions, to you, some of which might sound 'Odd', or Strange, but please do 'Hear Me Out'.
Firstly have you had a Referral, to Addenbrooke's Hospital Cambridge? Dr David Jane's Team, are based their. Dr Jane, who is also an Advisor to Vasculitis UK- our Sister Organisation- is, quite probably- the Best 'Auto- Immune' Doctor in this Country, if not the World (I know there will be some, particularly American Doctors, who will contest this). Dr Jane's Team will, completely 'Check' both you AND your Medication. They will, I'm sure, make recommendations regarding 'Other' Doctors/ Specialists, that you, could/should see.
Do you have a GP, or 'Main Doctor'/ Consultant? What I'm asking is, Is anyone in Overall Charge of your 'Case'? If not can you ask, for Someone to be so Appointed. Having got 'That' far, I further Suggest, that you Write- to them- expressing your Feelings/ Worries/ Concerns/ Anxieties....Indeed just TELL him/ her how you feel. If you can 'Work some' Frightened Little Lamb/ Vulnerable Worried Patient, into the Mix, all the better. (I am Well Aware that this ISN'T your 'Normal' approach. You also, may very well, feel that this IS 'Playing' your Bad Health Card rather too much. A question, for you, has YOUR approach 'Worked'? Feel free to re-read, your own 'Post' before answering.) Will you, at the very least, CONCIDER my suggestions?
Please Don't take me for a Trouble Maker, I'm really NOT, I just- from Bitter Experience- KNOW that you HAVE to 'Jump up And Down' rather. Otherwise you might, very well, be Left at the Wayside. (Found Abandoned at Hole 2, so to speak.)
Just a Couple of 'Points' to remember/ bear in mind…..If you Address Correspondence to a Named Person then, by Law, they Must see it. Secondly, and I have had person experience of this, If a Consultant/ Doctor requests a Test/ Procedure be carried out, then it MUST be 'Done'.
By the way YOUR 'Post' wasn't Unduly 'Long', in actual fact, it was a VERY well composed, well written and honest Assessment, of your Situation. T-H-I-S I-S A L-O-N-G P-O-S-T!
Please DO, feel free, to contact ANY of us again RoseflowerDew. What a Pretty 'Name', can I ask how you Came By it please?
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