Wrongly diagnosed

Hi, I was diagnosed with RA 6yrs ago and fibromyalgia 4yrs ago I also have bipolar I kept getting all these horrible feelings tingling and feeling so weak and in pain could barely move doctors kept blaming it on my having bipolar until recently when I got a new rhumatologist I told her all my symptoms and said is there a chance I don't have RA at all and it's something else she was lovely really listened and did more tests I don't have RA and I'm not crazy she said I have lupus and connective tissue disease it's actually made me feel better knowing as for the last six yrs all I've heard is its bipolar doing it I swear I could of screamed in drs face so glad I pushed and pushed for answers still feel ill almost everyday but knowing it wasn't all in my head has relieved the stress which makes the symptoms worse thanks for reading xxx

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  • Hi Jammy13,

    I'm glad to hear that you've now got a correct diagnosis and that it's helping you feel better. If you need any information about lupus and connective tissue disease we have a free pack available. Just send me a private message or email paul@lupusuk.org.uk with your name and address if you'd like me to send you one.

  • Jammy...glad you are feeling better about diagnosis. It helps to not feel like you are making it all up. How did they correlate bipolar to any physical symptoms? Never heard of that connection.

  • Hi natura , I honestly don't know the different consultants just passed me back and fourth my psychiatrist believed it was physical as she said I've been stable for years one gp kept saying the tingling is due to bipolar I never see her anymore I finally got re referred to hospital as I'd had enough of them telling me I have bipolar yes I know I've had it for 30 yrs my new rhumatologist did other tests aswel as mri and ct then spent over an hour explaining what was wrong I was so grateful to her for believing me and not like the ones before her who would just say your high you need to be on lithium just because o was frustrated at them for not taking me seriously now thankfully I'm getting the right treatment and don't feel like a freak thanks for your reply

  • Hi natura , I honestly don't know the different consultants just passed me back and fourth my psychiatrist believed it was physical as she said I've been stable for years one gp kept saying the tingling is due to bipolar I never see her anymore I finally got re referred to hospital as I'd had enough of them telling me I have bipolar yes I know I've had it for 30 yrs my new rhumatologist did other tests aswel as mri and ct then spent over an hour explaining what was wrong I was so grateful to her for believing me and not like the ones before her who would just say your high you need to be on lithium just because o was frustrated at them for not taking me seriously now thankfully I'm getting the right treatment and don't feel like a freak thanks for your reply

  • do not changes drs and tell them correct history and side effects they savetime and money. do not killhis time use dr is fresh.T.Q>

  • I hear you jammy, I was curious because a doctor who only saw me once a year, maybe, called me bipolar when I was home everyday with a baby and a 2 yr old by myself for 7 years. Who wouldn't be? I had not life, and my husband barely helped. Though he remembers differently. You also might just be highly sensitive, which I am. Elaine Aaron wrote a book on it. Hope u feel better. Sounds like you are with better drs now.

  • That's so awful was same with new baby girl on my own locked up in a mental hospital coz I was too happy at the sight of my beautiful little girl we were there for 3 and a half months me arguing not wanting to take their crappy drugs which I'd been addicted too for nearly 20 yrs which I came off on my own as soon as I found out I was gonna be a mum and get a second chance I didn't want their drugs obviously in the end o had to choose take the drugs and keep my baby or ignore them and they take her away no choice at all she's my world the last few weeks in that hospital I started getting pains in my feet after a few hours later I was in so much agony o couldn't move got taken to see Dr who said he thinks it's RA had tests X-rays started on methotrexate steroid injections and told I had RA few months passed was home with my baby taking meds feeling like death everyday but she kept me going so many times over the last 6 yrs I've wanted it to be over but she made me push myself out of it so many times at the hospital had nurse say you can't bring her here should I have left her in a cupboard not everyone has someone and at the time it was just me and her so eventually I stopped going at all kept on the pain killers and thought this is it how it's gonna be then I met an amazing Dr at my new surgery she took the time to get to know me and listened to me I can't lie I was begging for help the pain was bad enough but the tingling omg it was torture she sent me back to rhumatologist who as I said was lovely did more tests and told me she would make me more comfortable I still feel pain and tingly and weak and exhausted but I don't feel like a freak anymore I've got a great man now we've been together 2 and half years my little girl is amazing at everything she does funniest thing I've ever seen ive got 2 grown up sons who adore her she doesn't know she saved her mummy's soul yet I used to like having bipolar but when it gets used to make you go away and feel ashamed that your phsyically unwell makes me want to spit sorry that went on a bit felt good to right sone of it xx

  • Sorry for that feeling emotional it would have been my eldest daughters 16th birthday tomoz xx

  • i am sorry god bless her. Isare best wishess her birthy day.

  • It's ok jammy...sometimes life feels very unfair and can be extraordinarily difficult....especially when children are thrown into the mix....glad you have your wonderful children to help you. Mine help me too. Especially when I am depressed and just need a hug.

    Take care..

  • Thank you hunni you take care too xxx

  • Physicall handi caped person have right to adjust in the socity but mentalyy handicaped has his own time.

  • It is a pretty emotional thing to get a diagnosis you believe at last I'm sure. I was diagnosed with RA three years ago and I'm convinced it is Lupus or Sjogrens or some broader connective tissue thing but they all just hedge about with me. I hardly dare mention when I'm in pain now because I have hardly any swollen looking joints and fear they wont believe me or will call it fibromyalgia. Most of my pain is nerve pain these days and I tingle and burn so badly it often makes me feel sick - like funny bone pain. My RA friends have different symptoms to mine. It's strange having a diagnosis you don't think fits as for ages everyone kept saying I was in denial. I see a neurologist in 12 days and hope he talks some sense to me at last.

    Glad you have made yourself a new life too now - my aunt is bipolar and she's amazing - last year went back packing round South America at the age of 71 with skin cancer, angina and diabetes! She's brilliant but she's on a lot of medication.

  • inthese days the corporarte drs some recomonded drs work in the hospetals they are wrong diagiones and un usefull drugs recomended pl the patisent gain some knowledge medicencess and drs and prictiptions. save their diagions reports and records , be care full medicencess.

  • It's not that hard for the Dr to test if you have RA or something else my RA test came back negative and other tests came back positive don't be ashamed to say what's going on that's what they are there for tell them be strong minded and tell them exactly what's happening don't be scared they are people awel and make mistakes write it down when you go next time good luck x

  • Thanks Jammy13. The trouble is that my RA was diagnosed by clear symptoms that I'm told could only be RA. I sought a second opinion but this professor said that from photos of my hands when diagnosed it could only be RA. He told me that being post menopausal (age 51) now it was very unlikely that I have Lupus because I would have had organ involvement by now. So either it will come back clearly or not but anything else would be an extra disease rather than instead of/ misdiagnosis. Hopefully the neurologist will be more forward thinking than my rheumatologist is!

  • I see the neurologist and he was lovely but said the rhumatologist would be able to help more than he could they said at first I had seronegative RA but was told there's no such thing my blood test came back normal for that but my other blood tests came back she said I had lupus and connective tissue disease did scare me but there's loads better treatments now if ya wrongly diagnosed surey the meds are wrong methotrexate made me worse my hair fell out in fact every drug they tried made me worse in a different way was a nightmare still is a nightmare but like o said the I don't feel like doing it to my self anymore my dr is lovely explains everything so it's easy to understand its crap she said and will always be crap and enjoy life as best as you can honesty is better than hearing your manic because they can't explain what's happening to yA your own body attacking you nuts xxx

  • Aww she sounds brilliant

  • I agree I so prefer honesty - don't need sympathy but hate being patronised by my rheumy! I think he finds me threatening because I read a lot and am a volunteer for RA charity. He says non erosive RA so far and as I can't tolerate drugs at all so far I'm off them all now apart from thyroid med and eye drops and vitamins. I saw a great professor of connective tissue diseases and he spoke to me as an equal and that was so refreshing - wish he was my doctor not just a one off second opinion!

    My bipolar aunt told me that she's no time for people in denial and best to face all these health troubles head on so I do as she's the most rational and intelligent person I know! X

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