I had a ultrasound done about a couple of years ago , after begging rheumatologist about my painful weak wrists , finally this was done plus X-ray of hands .
Early erosion found in wrists ...
I now have a diagnosis of RA to at to lupus , Sjowgrens etc ect ..
I have asked for another scan has I feel I need a carpel tunnel release , and would like to know if further damage is been done ..🙁, has it sure has hell feels like it .. + have demyelination diagnosed .
My nerve conduction test was cancelled last March , and not booking another even though I requested .
My rheumatologist says we just need to to start myclofenic and biologic infusions ..
Yet I need piece of mind regarding what stage my RA is now and feel I need to see hand specialist has the last scan 2 years says my median nerve is been pushed way out of place .
My point is why am I been refused updated scans and nerve conduction tests ?
Does anyone else get refused scans etc ..😕
I’m begging to think it’s a case of just keep taking the pills ??
Any suggestions has to why my rheumatologist is refusing updated information ... 😞
🦋❤️
Written by
Willow1414
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I think that you need to ask your consultant these questions. They know your case and would be the ones who could tell you why these are being refused. He has said you just need pills but you need to find out why he thinks that. X
It’s so confusing sometimes isn’t it. I’m at a loss as to why these things can’t be explained to us clearly, to avoid situations like this. A decision has been made about your care but you don’t understand why.
I have dealt with this myself by putting my thoughts and questions in writing to the doctor. As the patient you deserve to understand these decisions and the treatment plan. Your thoughts should be considered.
Infusions and the need for them should definitely be explained.
Do you feel able to telephone the doctors secretary and say you have questions for the doctor? Or write it in a letter? Unless you have an appointment coming up soon and can go armed without your list of questions, to be answered before the treatment starts?
You could ask for a second opinion. I realise this can feel awkward, but NHS Trusts generally have to accept reasonable requests. If you have a good GP I would talk it through with them.. They may even be able to refer you to a hand specialist independently of your rheumatologist. Carpal Tunnel is maybe a different specialism?
What is looked at is my worsening blood tests results and the state of my joints /health
Meaning we don’t need to scan but need to treat . This is what I’m told .
I’ve left a message with Nuffield private .
I’ve no money for this , but depending on the price I’d a scan , I may well get one . At least it will give me peace of mind with my joints as to how far they are damaged and wether I need to see a hand specialist .
I can understand that this would really help for you to know. Even if it doesn’t alter treatment, I am a little surprised they don’t want to know too. It really varies, I’ve always found these were straightforward referrals in the past (was sent straight to X-ray during one appointment). I hope this isn’t due to increasing pressure on NHS seems a shame you should have to pay.
I ant understand but my eye is dropped badly and not been seen but photos looked at and investigations ongoing. I asked for referral to ophthalmology but my doctor refused despite blurry eyesight and twitching in other eye and still no answer for the drop which has been well over 18 months. I cannot understand the refusal.
Thanks willow, gp refused and I don’t go to docs anymore, it’s fruitless and demeaning, but when there’s no answers for my face/eye and eyes a problem it would make sense. Optician said my eyes are very dry and gave me drops and said he’d leave the rest to neurologist. I just can’t fathom when no answers why not refer me even without asking 🤷♀️ Refusing to refer me is nonsensical .
I hope you get results 🙏 we all need answers don’t we to be able to understand and cope 🙏
Yes it would give peace of mind to know what stage my RA is at and also confirm it’s nothing that needs further intervention , and ways of managing myself .
I was told by my rheumatologist that he would be referring me back to occupational therapy for help and advice regarding protecting my joints , at least that’s something , although I don’t know at this stage if this has actually been done 🤷♀️.
I suppose us complicated cases are on the back burner.
I hope you get answers to your health issues . Maybe asking why are you not referring me and the reasoning behind this , may put them in a different way of thinking ?
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