Pain Concern

Losing strength in my knees/legs!

Losing strength in my knees/legs!

Hi, I've recently been seen by a consultant rheumatologist as my gp thought I may have RA but after examining me he said he was sure I didn't so ordered more blood tests and scans. Since seeing him I have gone from one painful swollen knee to two and now have pelvic pressure and lower back pain, the other day I found myself unable to stand up and got really upset my 16 year old son had to help me up. Has anyone had anything similar or any idea what might be going on..Ive recently started hrt patches and I do have long term back trouble since my pelvis split when I was pregnant, I spent 6 years on crutches and I'm scared I'm suffering further effects, apologies for long post. Kaz(50)

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That sounds very disruptive. Altho' the rheumatologist has indicated that you're unlikely to have RA, there are >100 other flavours of inflammatory arthritis, so to speak so it's good that you have further tests and scans that might evaluate you for those.

It might, of course, be something else altogether and further testing might show this.

I hope that the tests and scans point the way to a clear diagnosis and good treatment plan for you.

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Many thanks, just a worrying time.

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Hand/wrist scan showed nothing untoward, back to square one and more waiting lists.....wishing you well xx

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Hi KAZG66,

I had an experience akin to yours - except that I have had 2 spinal surgeries and chronic pain for a number of years prior to this. I was referred to a rheumatologist and saw a senior registrar. He examined me and ordered blood tests which showed the markers for RA. He was convinced I had RA to the degree that he rang me to discuss it with me. He started me on all the drugs usually prescribed for RA.

But then I had a follow up appointment and saw the consultant who, notwithstanding the blood tests, told me that it was a misdiagnosis! (The registrar seemed to disappear after this!) So I still have the blood test markers for RA but, apparently, not the disease.

This isn't entirely satisfactory as I have pain everywhere although the majority is probably directly attributable to my spinal disease there are other more questionable areas of pain.

I hope you get some real answers!

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Thank you for your reply, another month gone by and still no diagnosis, had a hand/wrist scan yesterday and was told nothing untoward showed up so back to square one, I'm in so much pain and it seems no one cares, I'm very depressed and physically and emotionally drained. Wishing you well xx

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Hi Kazg66, I had my life long "journey"with RA begin in 1972 with similar symptoms. I woke up with 1 swollen joint. Screaming! So much pain. Went to top Rheumatologist in KC but because I was RA neg, he thought I was mental. X- rays were of course, then OK. Then. Sed rate sky high. Symptoms jumped from joint to joint. Would go to Hospital ER. Told I was hysterical but NO RA! Couldn't walk, feet hurt so bad. Friends tell me their RA starts in feet, too. Hands & fingers triggered. Still RA neg RA neg for 40 years but recently AM RA positive! In 1978, FINALLY a Rheumatologist diagnosed RA. But by this time, I'd had to quit my office job, hands had visable ulnar drift. THIS Dr used a Classical Signs of RA list to diagnose me-- not just the RA blood test. He shortly moved to the local KS CITY VA (Veterans) Hospital so I could not find an R A Doc till 2015. My GP DID try to help. Getting me on Ibuprofen when first was a Presbribed drug. Still is a major pain help for me. So hang in there & be much more persistant than I was. By letting my RA run along so long, I recently developed RA Vasculitis which tried to kill me & put me in a wheelchair. Rituxan infusions are bringing me back. Look up the RA factor online & you WILL find that it can be Neg at first then change to Positive like mine did. If its Neg, Drs may just ignore you or think you are a hysterical wife like happened to me! Good Luck finding your diagnosis!

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Another month on and I still have no diagnosis, had my hand/wrist scanned and was told there was nothing untoward going in, obviously I need to wait for the official letter but I'm still in agony, my knees, groin and back. My knees are the worst, very stiff and tight in the morning, eases a little during the day but I'm still having to take pain relief, I'm signed off work and very depressed. I wish I could afford to go private as this has now been nearly a year...I wish everyone well and thank you to those who replayed, I'm grateful for your help xx

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Update, still no answers to my knee pain, xray showed no damage to knees, so still wondering what's going on, gp won't investigate any further and says if I lose weight it 'might' help, despite following a healthy Mediterranean diet I am overweight and cannot lose a single pound, questioned possible hormone problems but again this was dismissed, I am at the end of my tether..

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