Change of diagnosis decision

Has anyone else been told by their consultant that the diagnosis made 2 years ago is probably not correct as they now have better understanding of scans?

After being diagnosed and treated for psoriatic arthritis and enteropathic arthritis over 2 years ago ai saw another consultant at my review due to mine being on maternity. She said she didn't think I had psoriatic arthritis ( still have all the same symptoms ) and that they didn't need to see me again,however she would request further scans !!!

CONFUSED .

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  • Similar thing happened to me recently. I too was alarmed when I first met my third consultant. After being diagnosed with RA and been treated for it for 3 years, she decided I needed to be tested for gout and my doctor would tell me the outcome. I had none of the symptoms and she didn't even go through the symptoms or ask me anything, just said I'm doing the test. Well fine I thought go ahead. Then she told me that I had an aunt who had psoriatic arthritis? which I don't. On her letter to my GP she decided this is what I have as it related to my symptoms and presentation and she would discuss it with her boss and check my xrays (which all show a nice even erosion). However, she didn't tell me this or discuss it at my appointment so it was a shock to read about it and I didn't understand it. So immediately looked it up and checked if the symptoms were the same and they were not. I was in a bit of a panic wondering if my meds were wrong, etc, etc, and what difference it would make to my life. Then she sent me another letter, saying my xray was in keeping with the original diagnosis and no mention since of the gout blood test result since by anyone! Amazing, she's told me twice that she's not actually read my written notes though which I find astounding! I know the NHS is strapped for time, so am I at work, but I at least have the decency to do my research..... so we got off to a bit of a rocky start and I now have no faith in her. I think to myself, your life is in her hands...... :(

  • Thanks.....She didn't even say what she thought it was. I go for hand and feet scan this week and have had MRI for back. Will go back to Gp and see if they have had any notes

  • Oh I HATE stories like this! I've seen three rheumatologists 4 times in 2.5 years, and don't think I've had the same diagnosis twice yet... Too many consultants seem unable to listen, or are disinterested in what we have to say, and when they don't even listen to each other, it is just a nightmare. Do they not understand they mess with our heads and our lives when they chop and change like this?!

  • I've see a few consultants who have all been great but this wasn't one of the team and as loobeey Lou says didn't really ask me anything. I will await the results of scans and pursue with my GP

  • I've got a very good rheumy. If anyone wants his details just message me, then you can judge whether the distance is acceptable. Perhaps others who have great rheumys could do the same?

  • I completely get your exasperation. I was diagnosed with RA in 2011 and have queried this diagnosis several times - thinking I might actually have lupus. Because I've had allergic reactions to four DMARDs I'm now not allowed to try anymore. Meanwhile my RA symptoms have since disappeared and been replaced by neuropathic/ neurological ones.

    I have switched to a new rheumy in a new location. This guy queries my original diagnosis - as I've done myself - but says that he will just about accept that I did have RA based on my account of symptoms and my bloods - not on the previous diagnosis by his colleague alone. So does he think a qualified rheumatologist would misdiagnose a patient and risk putting them on Methotrexate, Hydroxichloraquine and Azathioprine without being satisfied that they had RA or a related condition then?

    Apart from rather grudgingly accepting that I probably did have RA, he's adamant that I don't have any other connective tissue disease because of my negative autoantibodies and thinks that my neuro symptoms and fluctuating inflammatory markers must be due to something non-rheumatology related - but he's not sure exactly what because this isn't his area of expertise.

    So the symptoms I've been blaming for five years on RA are actually not rheumatology related according to him.

    We are told RA doesn't go away, strongly advised to take powerful drugs and then told that either our diagnosis was incorrect or that our RA has burnt itself out for the time being and we should look elsewhere for answers to our present symptoms. It's hard.

  • Sorry to butt in, but am rushing and don't know where to post my question. You and I have corresponded before. I have Sjogren's and was just told last night by Cleveland Clinic doctor that I have Restless Leg Syndrome. He is starting me with a low dose of Requip. I am the one that has frozen legs from the knee down and left leg sciatica plus toothache like pain in my upper left leg especially. Anyone else with RLS that can shed any light. I am trying to list my house for sale; new one ready by May 1. A lot of stress which I "know" doesn't help matters. Many thanks ahead of time. Best of health to all of you. Carol

  • Hi Carol - my stress levels over house buying and selling and moving are in a league of their own - read my recent post for more if you have time!

    There is, I believe, an RLS HealthUnlocked community here if you find communities in the bar at the top and join. I don't know enough about this condition or your new med to have suggestions or experience to relate I'm afraid. Good luck to you. X

  • I was diagnosed with RD and fibromyalgia mar 2014 and treated with DMARDS which gave me really bad side effects and I was signed sick from work as much from the side effects of these drugs as the diagnosis. I lost my job last year through ill health. By April 2015 after seeing 5 different consultants over the period of a year and feeling worse than ever before I was told I don't have RD all my symptoms are from fibro and the osteoarthritis Ive had for 7 years and I should see my gp for pain meds & cbt(they didn't hear anything I said). This was decided without any up to date blood tests or scans. I wrote to PALS (patient liason service) who arranged a meeting with a Rheumy who promised to see me after scans and blood tests. This didn't happen so after speaking to my GP he wrote to Rheumy who have after scans and blood test diagnosed me with inflammatory disease and started me on the same dmards again despite my previous history. It seems like a vicious circle as I have been feeling really unwell since starting the meds 3 weeks ago and its making me wish I had never gone to rheumy in the first place as I feel my health has suffered and my life has become so much harder because of the meds prescribed. I feel I will never be well again.

  • That sounds like a nightmare flossy - a particularly bad experience. I'm so sorry. :(

  • Thanks Flow4. I always feel that because I'm a larger lady (well not so much a lady) they dismiss me before speaking to me. The last Rheumy said perhaps she should ask my dentist to wire my jaw shut! Charming. She doesn't even know me let alone what I do and don't eat. She probably eats more than me. Sorry I'm going off on a rant again Ill shut up now. Joolz.xx

  • I know how it feels Joolz, assumptions hurt. It was the other way round for me, I was thin, couldn't put weight on however hard I tried or whatever I ate & it was assumed I just didn't eat. This was in the days before anorexia was talked about & I was labelled by many similarly.

  • Oh, I know that feeling!

    I wrote MY rant down and sent it in a letter to my doctors. It was very therapeutic! You might enjoy it... :D healthunlocked.com/nras/pos...

  • Great letter. Sounds all too familiar. At a GP appointment when I got so down with the pain from my knees and feet because of lack of help and care I sat and cried and my then GP told me to go and make an appointment to see another GP as she couldn't deal with me and depression. I hadn't even had xrays or a diagnosis then so didn't know what I was dealing with. I changed GPs and got xrays confirming chronic osteoarthritis in both knees needing knee replacements and long standing ruptured Achilles which if they had been treated would not be causing the issues they do now. "Let down" doesn't come close.

  • This is unsettling I'm sure! If you're unhappy with this dr ask to see another. I've had two years of agony because a dr queried a decision, took me off meds and washed her hands of me. My new dr is not like that and I think we're getting things back under control. But don't hang about, your GP can ask for you to see someone else, just check the new dr is experienced and cautious I'd say!

    C

  • Wow so sorry you are going through this. The one thing I learned early on is make a noise, write letter and phone calls and if you aren't happy do it again. I love in Australia and it was one hell of a battle to even get to see a rheumy after another specialist tried to tell me it was all in my head because I was a woman 'of a certain age'. Geez!!!

  • I was told I had seronegative RA, wasn't happy with the doctor so got a referral elsewhere and actually I have joint hypermobility syndrome/ehlers danlos. Don't be discouraged if they say it's not RA. Mine definitely wasn't and I'd been taking all these potentially harmful meds that I needn't have done, including one I had an allergic reaction to

  • Hi

    I went to my GP who gave me the letter from the hospital. It states that I get pain only when I do anything....which is not the case. the MRI results show no inflammatory disease in spine so just waiting on my scan results from feet and hands

    my GP ,who knows me very well was concerned that my symptoms have increased greatly since coming off medsx( as advised by consultant) and has told me not to worry if they decided it is now not Psoriatice etc...he will support and treat me re pain.

    makes you wonder why we have specialists !!!!,

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