misdiagnosed with long covid and covid toes but still none the wiser

Posted Mon 15 Apr 2024 18.58 by welsh girl

Hello. New here and wondering if anyone else has had a similar experience. After being misdiagnosed with long covid and covid toes and becoming very unwell my employer paid for me to be seen at a private hospital where I was assessed and had bloods and xrays done and was diagnosed with PA. (I already had a "rare marker" for some form of inflammatory arthritis according to my GP and was on an NHS wait list. ) The private rheumatologist sent an urgent referral to my local NHS hospital but I was never contacted as they said they never received it . A few months later I was seen off the back of my GP referral the year before. The consultant advised me without even having feet or joints checked that I was fine as no history of inflammatory arthritis in my medical records :/ but he could send me to have bloods done. At the follow up appointment I was advised that PA cannot be diagnosed from a blood test and my bloods looked fine. The consultant did check my feet and joints this time though and told me to wait for an ultrasound appointment. My toes and nails have become deformed, they go from being swollen and itchy to looking dead. My joints in my legs and arms are painful and inflamed and as Xrays showed damage to both knees to the point that I now have to use crutches due to developing osteoarthritis. Scared that untreated PA will cause damage to other joints. I have had these symptoms which have been getting steadily worse since May 2020 and apart from a short course of steroids which made the inflammation subside ( from private rheumatologist) I have had no help. Exhausted no matter how much I sleep, in pain as soon as I wake up and missing the life I had before "covid toes" arrived. Has anyone else been left without treatment when hospitals have differing diagnosis methods?

Posted Mon 15 Apr 2024 20.22 by StorminNorm
Hi I am a 50yr old male who has been living with severe psoriatic arthritis since the age of 29

Hi, reading your message concerns me and you need to act now. Firstly I was a very healthy young man who was never ill because of this I never had a blood test until it was too late as my PsA had been running untreated for years, to say it can't be diagnosed hmmm I'm not sure as the key markers are in your blood results you need to check your ESR should be below 20 mine is currently around 100 as my disease is very active but it has been a lot higher and your CRP this should also be very low but mine is over 100 you need to get on to your GP get another full blood test that will check your ESR and CRP and ask your GP to refer you to a PsA specialist or as I did pay for a private consultation to get the ball rolling which is what I did as most private consultants will have an NHS clinic they can add you to. Luckily I did this when I arrived at the clinic I had lost 7 stone and was in severe chronic pain my consultant ordered more emergency bloods and admitted me to his ward where i remained for 2wks until the PsA was under control, at this point I still hadn't got an NHS appointment from my initial referral ,and I've been under their care for 22yrs now having regular treatment and blood tests getting on the right treatment is crucial about 12yrs ago my PsA flared and has been very aggressive ever since doing untold damage to my joints since then I've had both hips replaced, 1 knee, 2 wrist fusions and an ankle fusion I'm currently bed ridden unable to walk on my right ankle waiting for another operation which I hope is happening soon as I've been waiting for nearly 2 yrs covid has no doubt caused a massive disruption to the NHS and it's services and I cannot fault the treatment I've had and staff I've met over the years my only complaint is I wish it would happen quicker as all the waiting is only causing more damage to my joints so my advice is don't leave it untreated get on to your GP and start demanding action you should be able to search online and find a good PsA consultant close to you and also find out his/her private practice I don't know how much this would cost as it's a long time since I paid but it was worth every penny to see the right person and get on the right treatment to get your PsA under control as left untreated it will get extremely painful and very damaging to your joints and body I hope this answers some of your questions feel free to ask me anything should you need to know more. I hope all goes well for you

Posted Wed 17 Apr 2024 21.34 by OhNo_NotAgain? (edited Wed 8 May 2024 07.27 by OhNo_NotAgain?)

My understanding is that there is no blood test to differentiate between, say, Psoriatic Arthritis and Rheumatoid Arthritis. Also, generally the treatments are the same, so it is not such an issue. ESR and CRP are quite old blood tests and are just indicators of inflammation and are often used to track progression (level) of inflammation. My understanding is that they do not indicate the specifics of an infection, or to discriminate causes. I have osteoarthritis in several jounts, caused by wear and tear an a few fractures in the past, and I have psoriasis. I have one finger with swollen joints suggesting arthritis, probably PsA given my psoriasis, but it does not really matter if it is PsA or RA.

To take part, sign in or register with us