Hi everybody,I was last year diagnosed with RA aftr having all the blood tests,MRI,X-rays the consultant put me on 8tablets of Methotrexate n Folic acid tabs,but my nausea was so bad that it was increased to 5 tablets a wk .....my eye sight went weak,I had to change my prescription glasses,my hair fell it's unbelievable my aches n pains were too much,I had cough all the time n was drinking lots of orange juice for nausea.....I started to look on the Internet to understand RA better n read all the blogs even signed up for books n recipes n exercise plan for what to eat n what to avoid.....spent a lot of time not to mention the financial aspect of it as well,....Friday I had the consultants app at the Hosp now she tells me I don't hav RA n to stop taking Methotrexate n I hav Fibromyalgia,an unexplained illness of pain in the whole body........it took her only 5 minutes to throw me out of that clinic n told me the GP will explain it all wait for his appointment ....I was left flabbergasted n caught unaware what to say or do........
I feel very cheated,was I a guniene pig or what...lol
How could she hav miss diagnose ,I really suffered with the effects of Methotrexate,it was horrible........what should I do,pls help...!!!!??
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Junglequeen
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You cannot let this dreadful treatment go, you obviously need to see your GP to get help with your fibromyalgia as this is very painful and you will need help with it. Look up PALS this is,The patient advisory liaison service, they deal with complaints. You need to know how the initial diagnosis was made and how they came to diagnose Ra. Mtx is not given lightly. Every hospital has a PALS, I had to use them when my father was dying they were excellent. You will be in shock so give yourself a little breather and then pursue your complaint. If your GP is any good they will help you. I also think you should ask your Gp to get you a second opinion as Ra and fibromyalgia can go hand in hand.Stay in touch with everyone on here you will get lots of support.
Good luck and try and stay positive you have had a rotten deal,
Hi flaxton,thnxs for ur adv......I'm going to see PALS n also aftr the hol see my GP, I'm really feeling rotten for my diagnosis,I appreciate all ur help,junglequeen
Hi sounds like you have had a bad time of it.I hope things will improve for you real soon. I hope your GP will show you more compassion then that awful consultant.
As above think i would have to complain about the treatment you have received to date. Take care of yourself.xx
Hi flaxton again,I forgot to tell you I also hav very sharp pains in both my kidneys frequently during the day since about 2 months now......I'm worried for myself in case MXT has done some damage,I'm going to ask the GP to refer me for a kidney test......
This sounds terible, I think a second opinion is in order?
I am so sorry you were mis-diagnosed. Also that the MTX caused so much sickness. I was also diagnosed last Oct with RA after being diagnosed with PMR 7 months previously. I was on high dose steroids when I went to the rheumy. My Gp sent me to the rheumy cos of my painful hand. I had seen the same rheumy 2 yrs before with my hand but he never diagnosed RA. But this time I saw him he apologised for discharging me 2 yrs earlier as I had been left without treatment and now it had hit me like a steam train. He doubted I had PMR (purely cos of age) and wanted me to drop the steroids as quickly as I could. I was put on 20mg MTX and folic acid. Like you I have suffered hair loss but that's it. I am on folic acid 6 days to try to stop the hair loss. The MTX is also not it's job and now have had hydoxychloroquine added to it. I have a lot of pain not explained by RA or the PMR (which rheumy now agrees I have) so I questioned him at my last visit. I asked if I had some degree of fibro and he replied "oh yes of course". But he also added that my bloods would not be raised if it was just fibro. So fibro does not increase your cRP and mine is rather increased and has been for several years. Treatment for fibro is drugs like amitriptoline etc. I know as my daughter has it.
Have you looked up fibro? Are your painful area's as they show? I have all except my elbows. Was your CRP increased?
I would write everything down, go to your gP and ask for a diff rheumy.
Even though the sickness did the MTX work at all? I am still on steroids as every time I try to reduce I flare big time. RA is an illness that takes a lot of getting your head around. I do hope you get answers soon and some relief for the pain,
Hi Sue,thnxs for all the info,will go to the GP n see what all he says to me but yes I will also get second opinion n although I'm very positive n am still at work p/t .....cannot help feeling miserable at the treatment,.........
Hi, sorry you've had such a rotten experience. Sadly it's a very familiar one to me - I was diagnosed with sero-neg RA and treated for it for 20 years. Had resisted mtx as really didn't like the thought of of putting anything that toxic in my body but finally gave in and decided I needed it as my quality of life was suffering too much so asked to be referred back to rheumy. Had a very cursory 10 min appointment where the rheumy looked at my x-rays and said I didn't have RA but a combination of fibro and genetic OA so they wouldn't see me again. Was in pieces and asked for a second opinion with someone who is supposed to be well versed with sero-neg but that didn't go much better as he seemed miffed that I'd doubted one of his team. However he did decide to try and get some help for me rather than just kick me out the door and referred me to podiatry, OT and physio. That was all just before Christmas and I'm in a much better place now. Still not entirely convinced it's all just fibro and OA but have seen podiatry who have ordered special insoles to help with the pain in my feet and see OT regularly. They've been exceptionally helpful and kind - at first all I did was sat and blubbed and voiced my fears but they were supportive and waited until I'd got it out my system to do their thing. Due to see physio next week so will hopefully get to the bottom of the pains that clearly aren't fibro or any bit that's been diagnosed as OA. So you see there is help out there. If you live in an area with more than one large hospital it might be worth seeing if you can be referred to a different one for your second opinion so there's no element of closing ranks (sadly not an option here). Hope you're soon feeling better and start getting the care you deserve xx
Thnxs mistymeana,I'm sorry to hear of ur exp,it sounds like v hav let these highly experiencd n highly paid consultanta misdiagnose n get away with it.....I never even for a sec doubted her when she said I had RA n stared on the MXT program she put me on......v hav blind faith little to kno these quakes r jus in the rut n v r on the assembly line....tc dear
Meant to say - have a look at Fibroaction forum on here if you haven't already. It might help you identify if any/all your symptoms could be fibro related and give you a little more info for when you go for 2nd opinion/PALS. I've not been the PALS route yet as waiting to see what physio turns up xx
I agree that you can't be expected to simply accept this new diagnosis on the basis of such a brief & brutal consultation. I too think you should contact PALS to register a complaint and to get their support and also see your GP to discuss what's happened & ask about getting a second opinion.
You've been treated very shoddily. I know that you need to be as calm & determined as possible when you log a complaint and start seeking more help so I don't want to make you even more angry - but a misdiagnosis followed by months of possibly unnecessary mtx sounds like medical incompetence. If I was that Consultant I'd be grovelling for England - even if it wasn't her who was responsible for all this you'd think she'd be apologetic on behalf of her dept.
If I was in your shoes I'd want to know exactly what my bloods show right now, particularly the inflammation markers ESR and CRP. Obviously you need your current condition reviewed much more carefully than is possible in a five minute consultation if you are to accept that you don't have RA. If you then agree that you do not have RA then you are owed a very complete explanation of how you came to be misdiagnosed and prescribed a powerful drug you did not need for so long.
Fibro and RA are a common combination, I know that much. I know that Fibro is not an easy thing to cope with at all but I do hope that you don't actually have RA.
Hi Woolly,thnxs for ur n everybody's support,I'm going to go armed with all these questions to my GP first n then take it forward,I'm glad in a way that I don't hav RA,but like u said hop I'm not misdiagnosed again .......... I get nausea even at the thought of MXT it's that bad,lol
Hello, ur treatment sounds appalling and I really feel for you. The sound that a nurse tells you ur diagnosis is wrong is not really good, you should have had a long and thorough meeting with the consultant. Fibro can go along with RA. I would want to know what they diagnosed ur RA on, what symptoms.? You really as everyone says have to either ring therheumy and demand to see the consultant asap or go to gpand complain, I. Think the first option will be the quickest. I am SO sorry you are going through this, I would be gutted. Try to put it out of ur mind as much as possible till tuesday and sending u hugs. Xx
Hi hun, I think it's fairly common!!! Not to take anything away form how you are feeling at the mo' but I think most of us have heard that the consultant 'suspects' one condition or even rules out a condition to only find out later it is or is something ele ( if that makes sense) Personally, when you see PALS, I wouldn't go in guns a blazin', just explain how the wrong treatment has affected you physically and then hearing another diagnosis ( from a 5 mins consultation) how your emotional state has been blown apart! It's not the drs/consultants fault, with regards to the wrong diagnosis, unfortunately these inflammatory conditions are difficult to diagnose correctly in the early stages as they are often accompanied by other conditions and it's hard to separate them and isolate the symptoms. You do have a strong case however for asking for a different consultant due to the lack of patient care you received in your 5 mins appointment. Be really nice to PALS but determined and precise with your complaint and you will get heard and dealt with a lot more effectively. I have family with fibro' and in comparison to RA, I'd rather the former. I have RA and OA and am 45. I found my best friend was my attitude, by that Im mean, when I take things as they come in life, I cope and my condition doesn't tend to flare. When I worry and flap, I get no further and encourage a flare up. These auto immune conditions are severely triggered by stress, as much as they are weather, if not more so! So, if poss, spend your time researching your condition from reputable UK sites ( not USA ones, or you'll think you're going to sprout wings and grow a tail feather....coz Uncle Bob Billy Joe did!!!!! ) and find o good forum that can give you positive advice and tips. Also look into 'relaxing techniques' in a form that suits you, tape/class etc. Big hugs to you, big breaths, you will get through this.......it's just a blip that feels like a mountain......but takle it step by step and pace yourself or you'll end up like Billy Bob Joe and running in circle 'wishing' your head was cut off ' lol. Take care honey xxxx
Hi Tamnwill,thnxs for ur adv,I'm starting to join in fibro blogs now n looking to do a bit of other therapies,am very positive n hav been in pain for a long time but haven't had a flare up ever .....jus constant pain to a certain level n then reduces a bit but its jus there......I suppose they hav to rule out many aspects to come to a final diagnosis,I'm a very timid person n often do not get to say what I want to or what I should hav said.......pals will not b blasted by me but requested to look into the horrible treatment I got.......thnxs
Hi. I have both. The first diagnosed was fibre m 10 years ago followed by R a 8 years ago. I have found the f m flare ups more straightforward to manage.
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