Everything that I have been complaining about for 8 years has now been seen on MRI. The private MRI that I paid for last week. Some of the best money I have ever spent.
Not only do I have 'florid' synovitis in my hands, I have widespread enhanced bone erosions in both hands and feet. I also have bone marrow oedema in both hands and feet.
With tenosynovitis that I complain regularly about.
The report specifically mentions the talonavicular joint as being particularly affected....the first of my symptoms...reported December 2016.
Those of you who know me will know that I've been asking about psoriatic arthritis for years and have been laughed at, ignored and worse. However....I have developed a small patch of red, flaky itchy skin on my shin. It looked kinda like psoriasis to my daughter and I. She has severe psoriasis.
So, I sent a photo to my rheumatologist's secretary, and asked him directly could I have psoriatic arthritis? He would not be drawn on the phone call. I reminded him that I have many symptoms of psoriatic arthritis (gut and extensive tenosynovitis for example) and that my daughter has severe psoriasis. He said he can't remember me telling him about my daughter....yet it is clearly there in my medical summary at the top of all my letters dating to my first appointment with my rheumatologist in April 2017, and every letter since, no exceptions. Letters that he writes of course.
The letter he sent me today was a cc to the GP letter. He now writes to my GP of a possible full blown psoriatic arthritis.
To say I'm p!!$$£d off with the medical profession is a severe under statement.
He concludes his letter to my GP saying we will move ahead with Adalimumab as he discussed this me at my appointment last week, and it is effective for RA and psoriatic arthritis. He will see me in around 4/5 months time. In the 'future' he will consider an anti - IL17 if the Adalimumab is not effective.
My rheumatologists on line 'blurb' states he is a leading expert in psoriatic arthritis. Such a shame as I really like him, very personable.
Educate yourselves, accept nothing, question everything. I'm articulate, confident have changed consultants , yet have got nowhere, despite asking regularly about psoriatic arthritis.
Now I know that often the treatments are the same, but some are better than others for psoriatic arthritis. I've never been given the opportunity for more appropriate treatment.
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want to slap my head against a brick wall for you Marie.
Had a major discussion on this with hubby and said I log everything so I can show a/lost weight, b/ do peak flow charts c/ do exercise done the list goes on then armed with why can’t it be xyz based on talks to ie lung charity or NRAs so we can talk IF they allow it.
mine is only 3 yrs with cardio and your since 2016 and it’s madness and you paid for it to the get the proof!
Firstly a big hug from me. It is so frustrating when you feel like a head banger who gets nowhere especially when you have rightly diagnosed the problem for so long. I know it is late, and frustrating but I hope you get the right treatment from now on. I have had on going bowel problems since 2014, as well as 45 years of RA.Once my gallbladder is removed I will go down the private route and find out what the bowel problem is, as I am getting nowhere with my GP. We have to be proactive today and not accept no for an answer. I have had RA for 45 years and never been offered a CT , ultrasound or MRI scan for RA. I now have neck problems and will push for a scan after my imminent surgery. I hope the Adalimumab will suit you better.
For RA diagnosis and treatment have regular blood tests, the occasional Xray,and a physical examination of deformed joints. Thanks for your best wishes for my op.
In case this has never come up before for you, read about BAM bile acid malabsorption, this is what my “it’s just IBS” ended up being. Now it all makes sense. My life has been severely affected by this for 20 years. I hope you find your answers so you can know what your dealing with!
I suspect this might be my problem but my GP dismissed it. I shall go privately after my op and question this at the consultation. Thank you, and hope you are getting the best treatment for your problem.
Deeb, I take an A4 update sheet with me to my appointments and question everything. Nope.....whilst some appointments are better than others....nothing really matters than the thoughts of the consultant....often before even hearing what you have to say.
Well there you go! I have a diagnosis of psoriatic arthritis and it is spooky how closely your pattern of inflammation matches mine. That talonavicular pain - I dream of a scan that shows mine!
I also had joint problems that preceded any skin problems. It was only thanks to a one-off appointment with a consultant who spotted nail pitting that psoriatic arthritis was even put on the table. And family history of psoriasis significant, as I'm sure you know.
Do you have spinal/SI joint involvelment? I found adalimumab fantastic for peripheral joint pain but nothing touched my back until I tried an IL17i - that said, everyone is different.
Oh M my language reading this is beyond colourful ( I’m from an Irish background ) so even I was surprised at how colourful it was.
Like you 8 years down the line I have been diagnosed with sero- negative inflammatory arthritis. My son has psoriasis too and I have developed scaly patches. My ankle and feet were my first sign . Many different types of physio no improvement. MRI showed spurs on heel . I had to argue with another physio that is not my problem. So she sent me to a more senior physio. Eventually he said I’ll do a Doppler scan . He was shocked at the state of my Achilles. Many tears and calcification. I feel I got luckier than you . I refused oral steroids and only had steroid injections at my worst . Best decision I ever made it showed where the inflammation was .
My hands have grade 2 synovial thickening and have a very pronounced ulner drift. I have had synovial cyst drained and my knuckles are deformed.
We trust these medics implicitly and we anre often ignored as wingers .
I had adilamumab last year . It wasn’t for me . I just started Rinvoq 2 weeks ago and dare I say my life is slowly coming back already .
I don’t understand why they don’t give everyone an MRI on a regular basis to track or diagnose more accurately. It must be cost saving to treat correctly rather than guessing and wasting money on drugs obviously causing us further health issues
Are you going to try a different rheumatologist?
I’m so angry for you .
Ps like you gut issues . I paid privately to see a consultant.
I pay privately for orthotics which are constantly changed . Pip covers nothing
He is the rheumatologist that I changed to around 2years ago as I was getting nowhere with my existing one, she was also bad tempered and quite cutting with her comments.
I actually quite like this guy, so I'll stick with him for a bit. But, I'll be watching 👀
Bloomin hell or words to that effect that’s awful. I know it’s good to see the proper diagnosis finally, but it doesn’t make up for the past few years of problems. Xx
I have no words and I have been chasing diagnosis for nearly 7 years and cant explain what ive been and am up against but you've given some hope and I will battle on even if futile presently but sadly your title is a good one and anger doesn't come close. I try to educate myself and try to be as articulate as possible but not being very good at it I think it's a big hinderance. Best of luck to you now with the future lord knows nowadays we need more of it.
I'm so sorry to hear of your difficulty getting a diagnosis too. Not always easy for the rheumatologist , I accept. But in these instances you would think that listening to the details the patient provides at each consultation would be the focus in trying to reach a diagnosis. Hopefully things will become more clear for you in the short term. Don't give up.
Well done you. It’s dreadful that consultants still often see themselves as all knowing and don’t listen, or if they do they dismiss us under the illusion they know everything because they are specialists.
I like to think I’m well informed. However, when suffering it is easy to lose confidence and the ability to be assertive.
Flippin heck! There’s a lot going on there and you must feel so frustrated at the time and angst you have experienced while the doctors dithered their way out of a definitive diagnosis for you!! They often forget that we know our bodies best and should trust that! I hope they now take you seriously 🤞🏻🤞🏻🤞🏻
It feels like going down rabbit hole after rabbit hole while going round in circles at the same time. I feel for you and completely understand. If we don't keep on top of things about our health who does these days.
Thanks after over five and a half years of constant battling and crippling pain I finally had my TKR on my right knee in February. It's doing ok (ish) but the left knee which wasn't great has had to do all the supporting during this time has deteriorated to the point where I am now back to square one and my lower back is now playing up. I am currently battling not only to get appointments with the GP surgery as the receptionists literally come up with all kinds of things to tell me there are no appointments at all. To when I mention that one GP said he would put on my notes after me having two consecutive appointments cancelled on the day (with a two week gap between each) that the receptionists could 'release an appointment' if I rang. Alas no I still have to battle with the receptionist first, then put on hold before 'miraculously' an appointment is 'found' out of the adamant there are no appointments bookable or not. Currently I am battling with a host of health issues and going down those rabbit holes so to speak with doctors and consultants and no one but myself seems to be' joining the dots' or seeing me as a whole body, just a series of parts. I am just about to send a letter to the sleep services after a full week of simply trying to contact to explain I can't attend the appointment due to having another appointment on the same day elsewhere. I've been passed from pillar to post told the appointments line don't deal with these appointments, given multiple phone numbers, some are dead with no ringtone, others have answer machines which no one responds to when I leave a message, been put through by switchboard to yet more answer machines, none of the contact numbers on the hospital sleep service site work, no email address or name of a secretary. I am not local to this hospital either, so a signed for letter is my last resort simply to rearrange this appointment. As it is almost a year since they did a (and this was not without errors on their part) a DIY 'sleep test' which they sent out for me to do with no instruction or the guided consultation I was supposed to have with them. So the quest for some sort of quality of life, feeling of wellness and feeling valued continues. So keep doing what you are doing Mmrr and I hope things will begin to move in the right direction. Meanwhile there is one letter to be written here for this hospital and another letter which due to the lengthy waiting now each time to see a GP I have to present for them to read as I cannot fit in what I need to say, discuss or show them in 15 minutes anymore. Take care and sending you my best wishes.
The NHS is in some state. Trying to contact the appropriate person is a disgraceful waste of resources , with the wrong person putting you through...to another incorrect person. And, the stress and time wasting for patients.
I read title of your post and, having been aware of another with long diagnosis journey (also Scottish) had to read. I am really glad you have diagnostic clarity at long last - even if you had to pay for it. Of course it shouldn’t be this way and fact that you sought out this consultant for their knowledge of PsA is not good.
I too had to pay last year and travel to London to see one of the world scleroderma professors privately to get my diagnosis of systemic sclerosis (already diagnosed with seronegative Sjogren’s) and hypermobile spectrum disorder unequivocally confirmed. I didn’t try to lead him at all - he just used his dermascope on my fingernails while quizzing me, pulled at my skin, asked me if anyone had ever told me I was double jointed when younger and did anyone else in my family have hypermobile stretchy skin - which he said has masked my scleroderma. I can’t count how many times I’ve politely suggested this to local specialists only to be repaid by “the look”🙄🤷🏼♀️
An eminent rheumatologist I saw privately some years ago, told me in 2016 that in her experience we are predisposed towards these illnesses. I was so startled that I didn’t pick her up on this enough but I recall her giving me examples ie that her patients with RA are stoical and drug compliant where her patients with PsA are angry and challenging and her Sjogren’s patients are anxious. I didn’t ask for where her patients with Lupus, Vasculitis, Scleroderma or Myositis sat on her spectrum but she did also say that I don’t fit any boxes easily and years later diagnosed my systemic sclerosis although this was then blocked locally until last year. I managed to ask her if the fact that diagnosis is often much slower for those with PsA and Sjogren’s due to lack of corresponding blood work might be a major factor. But she replied no - we are predisposed. I recall being disconcerted and not a little concerned by this idea. But actually she got it right about me having scleroderma (now seropositive) and it was interesting insight into how some rheumatologists think!
I now come back to my own theory that the best doctors will want us to help them piece together our own unique jigsaws and will trust us to lead them rather than other way round. Doctors talk of patient confirmation bias but it seems to me that medical confirmation bias is far more of a problem.
All this said I feel more sad and vindicated than angry at my own similarly lengthy diagnostic odyssey. My lovely rheumatologist is a Lupus (and RA) expert - which ironically is the one I’ve never had or been misdiagnosed with. But Scleroderma is often misdiagnosed as RA or even PsA because of swollen puffy tight hands and nail pitting. So I don’t blame her at all for any of it and she’s well making up for my very delayed diagnosis now. And she’s first to admit she’s not a scleroderma expert and willingly seeks advice from big fish in bigger ponds. Not that she can do much about digestive failure or me now needing bowel stoma surgery - there aren’t any targeted treatments for scleroderma GI failure.
Sorry for ramble but I’m trying to suggest that you wait and see how this rheumatologist responds when you are face to face with them. If they seem embarrassed and contrite but also wanting to get on and treat you as effectively as possible then perhaps you will feel more ready to forgive all the years in the diagnosis wilderness. If not then I hope you’ll find someone else - maybe from new generation for a fresh start.
It really shouldn’t be such a struggle Mmrr should it?! The condition already gives us enough to deal with. I will be hoping for improvement for you on the new drug, it’s about time! 🤗
Still battling on, but had after five and a half years finally had my knee replacement in February. It's doing ok (ish) but the rest of me is a work in progress! Hope you are keeping ok?
Oh I’m so pleased that your knee has finally been sorted, that’s been a long time coming as well! I’m rumbling along, been a bit more stable recently but now rheumy wants me to try reducing my anti inflammatories so not sure how that will go! Xx
"Doctors talk of patient confirmation bias but it seems to me that medical confirmation bias is far more of a problem."
Yep, and far more dangerous as it leads to medical errors.
"Cognitive error is pervasive in clinical practice. Up to 75% of errors in internal medicine practice are thought to be cognitive in origin, and errors in cognition have been identified in all steps of the diagnostic process, including information gathering, association triggering, context formulation, processing and verification."
Absolutely, 20 - 30 % of GP diagnoses being incorrect are accepted by the BMA, the actual figure is probably higher.
It is a difficult job trying to diagnose people within 10 minutes. The best way round it.....observe, listen and accept that you get it wrong and be willing to change the diagnosis.
I am so very sorry you have been through this, my story is very much the same. I was diagnosed with zero negative RA for over 20 years all while fighting to look into me having PSA instead. My rheumatologist gaslit me. It took a lot of years to get my diagnoses changed as it turned out I do have PSA and not RA. My rheumatologist said even if it was, these conditions are treated the same. Not so true, some biologics can be used for both conditions but some are more suitable for PSA. Also Enthetitis is a hallmark sign of psoriatic arthritis
My story is too long to go into all of the things he did to me, said to me, and in the end how my diagnoses was finally changed, but to say that I’m still very angry is an understatement.
I hope you can find some help now and some peace for yourself❤️
I too have been gas lit and had some quite awful things said to me. Talk about group think....when one sticks the label on it is very difficult to unstick.
Unfortunately I think this is often the case with the medical profession, they don’t always listen. I hope with your new treatment you finally get some relief 🤗
think I asked about how psoriatic arthritis is diagnosed previously, ive had psoraisis, for years, and now in last few years have bee diagnosed with “arthritis”in last year dr calls s it osteoarthritis, been in back(many other back issues) and hip, now last couple mos hands, interested in how they finally diagnosed your psoraitic arthritis and not familiar with name if medication you mentioned, I cant take any type of anti iflammatory med been told as I am still on 4 mgs of pred as diagnosed with pmt in oct 2016
Psoriatic arthritis is a difficult one to diagnose, but has some distinguishing features. Try looking at the NRAS or Versus Arthritis websites. It might also be worth while asking the medics if psoriatic arthritis is a possibility for you ?
They'll look for certain patterns and features. For me it was the nail pitting, heel pain, and one time having a single swollen finger (even though my joint pain and swelling is nearly always symmetrical). So I was labelled "inflammatory arthritis, probably psoriatic" for a while.
Then it came to prescribing biologics and my consultant at the time had to give me a firm diagnosis in order for me to qualify, so he made the leap. The diagnosis was made for expediency of treatment more than anything.
Thankyou. I've been on biologics/ JAKs for 5 plus years. Started Adalimumab approx 6 weeks ago, my health has deteriorated since then, with my joints and soft tissues ballooning, my body heat is unbelievable, the amount of sweat I'm producing is difficult to deal with. I've increased my oral steroids (I have agreed parameters with my rheumatologist) whilst waiting for the rheumatology helpline to respond to me...but it can take up to 2 weeks.
Adalimumab worked for me a bit for a while, but never helped my spine/SI problems. Now I'm on an IL-17i and it's been the best thing.
I had to basically diagnose myself and then steer them in the right direction. My first rheumaologist didn't want to find anything wrong with me so she didn't. She had another explanation for everything. She wrote "No family history of psoriasis" in my notes, even though I told her I thought my dad had psoriasis but wasn't sure (was later confirmed he had - and his sister and mother - but not all of us know our family's medical history off the top of our heads!). When a second consultant spotted my nail pitting and put it in my notes, she ignored it or didn't know the significance of it and it was never followed up on. I'm pleased to learn she is no longer practising medicine.
if only they could be held to account for their diagnostic failures. It’s our lives that are damaged not theirs and it’s a disgrace but glad you have answers at last
I accept that diagnosis are difficult, it is the mind set that many Drs seem to get themselves into once someone....anyone sticks a label on a patient. All I am asking is for an open mind and to listen.
another example of the sad state of the NHS. Like you I had to get an MRI done privately (minimum 22 week wait on nhs) to get a correct diagnosis of my hip pain, by the consultant I see on the nhs! which I knew damn well was caused by inflammation due to my RA. And again privately, had an ultrasound guided corticosteroid injection in the joint to fix it. It wasn’t the consultants fault as I get on well with him. He admitted and I knew getting it done on the nhs could be a years time. By then of course my hip joint would probably be destroyed and I would need a replacement. Now I’m back to him on the nhs so he can switch my medication as he believes that will prevent reoccurrence long term.
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