I was looking over the report on my PET/CT scan recently that I had in 11/22. On it, it says about the PMR. It also says that I had a soft tissue nodule on my left buttock - likely inflammatory, maybe from an injection site - please correlate clinically. It also says I have a left adrenal nodule, likely benign adenoma - please correlate clinically. Neither of this things have been mentioned to me by the rheumatologist. I asked my GP surgery about it. Their response was that they aren’t trained to read CT scans because they are GP’s and to go back to the person who ordered the scan. I spoke to him yesterday about another matter and he was extremely brusque and said he’d see me in October. I’m not worried about these two things but I do feel that someone should be looking into it.
As many of you know, I have Ankylosing Spondylitis and my rheumatologist cancelled my injections because my inflammation is going up not down. On the CT report, it states that I have multifocal moderate grade uptake in interspinous ligaments of the lumbar spine. This is exactly where I feel my pain and stiffness from the AS is and I was starting to feel less stiff there when he took the injections away. However, I’m wondering if this element could be PMR related, so I thought I’d ask the experts! I’m off to the hospital now to have an implantable cardiac monitor inserted. I think I’ll be suffering later today and tomorrow. Apologies this is alot of info and I’m absolutely not asking for medical advice, just others opinions. I feel I’ve reached the end of the road with this consultant. Many thanks!
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Bramble2000
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Is common but not associated with pain they say - so could be either but if that is where you have felt the AS previously and the right MAB worked, it suggests the AS is the cause.
"I feel I’ve reached the end of the road with this consultant." - must a be a year since I first said that to you, Do try and find one worthy of you.
You can go to your GP and ask for a change of doctor on the NHS because the relationship has broken down and he removed the medication for your AS that was working so you feel failed.
I’ve seen 3 different rheumies at one hospital, due to various problems. Having exhausted that, I’ve been referred to one at a different hospital. But my GP is fully aware of the situation each time, & understands the reasons for the changes. He also appreciates why I don’t want it on my medical notes, & don’t wish to complain through the hospital PALS system. So, yes, it’s definitely possible, & no, I didn’t pay for any of the consultations.
If you want to stay at existing surgery then suggest you contact practice manager and say you want to change nominated GP to another one [you can specify who, whether you get them I don’t know].
If you want to change surgeries, just fill in their registration forms [no need to say why you are changing] and if accepted they will request your notes from previous surgery.
Hi Bramble, I went to my GP with a list of the rheumatologists I wanted to see. I live in Essex so there were 3 hospitals to choose. My GP was very helpful and I was referred to my first choice. My logic was that I wanted a rheumatologist who was interested in PMR (not many are as it's not a glamorous specialty) and so researched them online and used knowledge from people on here to compile my list. He is a diamond among consultants in my opinion and has really been helpful over the years. I still see him about twice a year as I am still on prednisolone and other drugs he has prescribed for my other conditions. Time for you to find your own diamond 😀
Dr Peddasomyajula (Dr Mani to his patients) Consultant Rheumatologist at Broomfield Hospital, Chelmsford. He also does private work for Ramsey, Nuffield and Hartswood hospitals.
He is easy to talk to and not one bit condescending. He has special PMR clinics in Thursdays. He takes notice of all your symptoms and not just blood tests. He looks at the person as a whole and suggests different treatments to help. Since seeing him my pain management has been so much better. He is adamant that patients need to go slow with reduction of steroids. Genuinely the best consultant I've dealt with.
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