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Another day, another referral

Hi All, been keeping abreast of all that's happening here but not posted for a while so thought I'd post a quick update. Well I can't say I'm not getting my money's worth out of the NHS (with the exception of course of the rheumy team whose cavalier treatment has been well ranted about previously). Been seeing OT for about three months and found them very helpful and understanding. Had my podiatry assessment last month and they've ordered some special insoles to try and relive the pain at my heels and metatarsal heads. Should hopefully get them some time within the next month. Finally got to see physio on Tuesday and been put on hydrotherapy list and given additional exercises. She thinks spine problems are combination of my scoliosis, natural degeneration and fibro stopping me from moving as much as previously and nothing to worry about. Went to dentist yesterday and just happened to mention I've been getting blood blisters in my mouth even when I've not eaten anything hard or sharp. Luckily there was still evidence of quite a large one under my tongue. Better refer you to the hospital says she as it can sometimes be a problem with people with auto-immune problems like you. Ah, says me, they've decided I don't have said auto-immune problem after all but just fibro and OA. Hmmmm, says she, this might be the missing puzzle piece they need. So now got approx 16 weeks to wait to see yet another specialist. Not getting up hopes up that this will generate any sort of change of diagnosis as, on previous experience of hospital which seems more concerned with hitting time targets than treating people, they'll probably say it's all my fault for not liquidising my food before I eat it. Wonder what liquidised cake is like. x

5 Replies

Gosh you have been busy! Bet you are exhausted! Well I hope the dentist letter will add to the evidence for you . Liquidised cake? That's just wrong lol xxxx


OH DEAR XX. sounds a bundle of laughs not! hope you get resolution

ps i sure thats how gastric band patients put on weight liquidising cakes


Hi your blog sounds just like mine.I was diagnosed with fibro & OA in 2002. I was pushed out the door quickly with tramadol & amitriptyline. Had a problem with joint swelling & pain dr thought it was more than fibro & OA so referred me again to rheumy. I told them what my symptoms were & the fact that there is a strong family history of sero-negative RA. Was told no it is fibro & OA. So off I go again. A lump came up on my wrist was sent for an x-ray & radiographer sent report to dr saying that it was an inflammatory process of sufficient nature to cause erosive bone change advise referral to rheumy. So off I go once more which was quite recently. Well the rhuemy was so short with me he basically said before I had time to open my mouth. "I haven't changed my mind on diagnosis, you have fibro & OA". I replied "I didn't request to come here I was sent because of an x-ray report on my wrist which showed inflammation and a lump". He then said "Oh they can't diagnose you". So here I am not sure what to do. I have thought of going private to see someone else. So I really really sympathise with you & hope you get sorted on your next appointment I shall watch out for your blog. Good luck. Franbie x


I might be asking a silly question, but have you both had blood tests and if so what is your ESR reading? Because raised levels are a sure sign of inflammation. OK they can say that it could be inflammation anywhere in your body, but if you have painful joints, feet, hands etc, it surely can't be ignored. I think it is dreadful that you are both not being treated properly :-(

June xx


Hi June. Yes I have had my bloodwork done. My ESR is always within normal range, it has gradually gone up but not enough for them to look further. The thing is my father & sister both have RA & never had a high ESR either, they were diagnosed with sero-negative RA. Franbie x


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