I AM NOT CRAZY

[biskwut]

after reading blogs I realise I AM NOT CRAZY.... so many people have same problems getting a diagnosis, was thinking of cancelling next appointment with rheumy, not any more, have started keeping a diary of symptoms. thank youxxxxxxxxxxxx

[mstr]

Hi, I too have previously had the same thoughts but like you know these symptoms are very real. My GP states that I have lupus and the rheumy has said UCTD with more lupus symptoms emerging. So I think it does seem to take a while for a concrete diagnosis. It is so good to be able to be on this site though as it confirms for sure that we are not crazy. Good luck with your next appointment. M

[nanny4 in reply to mstr]

Hi to you both,keep on pushing for answers,it to 26 years for my daughter to get s diagnosis,now even that diagnosis is being questioned ,she has been dxd with systemic lupus she has skin,heart,kidney damage, cns involvment,swelling on brain and spinal cord,anaphalaxis from food allergies,vision loss, numbness and pain and many many more problems.she was dxd November last year now her dxd is being questioned as her meds are not helping long term.

Don't give up on your quest for a diagnosis,it is your bodies that will suffer if you do.

Keep diaries take lots of photos of you have skin problems.

I do hope you get some answers soon,take care, Sandy.

[loopy-lou]

Hi

Don't give up. I was lucky in that I got a diagnosis on my first visit to the rheumy. I did type up all my symptoms in a point system and gave it to the rheumy nurse before going in asking that it be given to the consultant to save time. If you can take photos any skin rashes or joint swelling and take that too. I also sometimes go to my GP before an appointment and ask that all blood tests are done.. I then go back to my surgery and ask for a print out of the results to take with me to the consultant. That way he/she has up to date results and a full picture of what is going on. They may try to charge for a print out but if you say they are to go to your consultant with you they normally then don't charge. Do write down even things that may be small and you are not sure that way they will get the full picture. Good Luck.

[mstr]

Hi Loopy-lou thanks for this.

In the past year I have had 3 positive ana tests in and the last one at 1/640, a malar rash confirmed by the rheumy, photosensitive face pics, joint swelling on ankles, hands and elbows. I have also had mouth ulcers, aches, nausea and more recently muscle weakness in legs, and arms. Oh I am also seeing a endocrinologist for thyroid nodules too. Oh and chest pains on right side of chest where I can;t lie on that side.

My GP has said that he has no doubt I have lupus so I guess it's just waiting for a confirmation of this from rheumy. He has said that I have UCTD so far and polyarthritis and an autoimmune condition. I guess it is only 16 months since I initially went to the GP for symptoms so that is not too bad given that some people seem to wait a long time for diagnosis. The rheumy has put me on placquenil and I have had steroid injections too. I have an appointment in the next few weeks so here's hoping that the diagnosis gets confirmed with the rheumy too.

It's good advice to go in with a list of symptoms and flare ups so I will do that.

Will keep you posted if I receive a diagnosis. KInd regards M

[Emylou]

Hi there to you all don't think your ever crazy as its not you. This is a nightmare of a disease and if you want a second opinion you must ask to be referred to the the Louise coote lupus centre at st Thomas hospital in London they are the best in the world and will certainly make you feel like you have a right to be there and it will open your eyes. Keep pushing your gp for a referral as it's your right it might be a battle to get there but believe me these lovely people will not make you feel like that in any way. Good luck and never give up you know how you feel as its your body it's happening to and you know how it makes you feel. Keep. Smiling and stay strong.

[mstr]

Hi Emylou, thank you for this. I am seeing my rheumy on the 5th July and I will ask to be referred there dependent on the outcome with my diagnosis. I think if I remain with a UCTD diagnosis then I would like to attend the Louise Coote Unit.

Thanks for your advice. M

[Emylou]

No problem hope you get on well and good luck.