I have been ill for 3 years and test after test,in and out of hospital with lots of symptoms that are very similar to MS, had scan 3 years ago ,but nothing showed up. been dx with functional neurological disorder!! recently i have had pain in my hand joints which is new, so my GP who is fantastic and wants to get to the bottom of what is wrong as he is not sure about the functional thing did new bloods and did a ANA test for Lupus. came back quite high and says there may be a chance i have lupus,. my neurologist said i must have been tested for it the times i was in hospital with the symptoms i had, but to her amazement it was not done, she said she just assumed it had been done. i am now waiting for an appointment with rhumatologist to get more tests. I just wantedto let people know on this site that Lupus is the great Mimic and Dr don’t know too much about it and when to test for it. i dont have the typical rash, but not everyone has it and you can have cns lupus.maybe for some good to ask about getting it looked at , worth a go as i may never have known !!!
Mmm, interesting! I`m in my 14th year of rapidly progressive symptoms. Had umpteen tests and lupus was included…negative. Got an LP on 15th Aug. If it shows nothing, will be going for genetic testing for HSP.
I guess you have googled lupus, yeh?
Drives you mad, eh, waiting, testing, results etc.
luv POllx
Yes, its the not knowing !! im fine though,try to stay positive and that one day we will know what is wrong. i have to wait for an appointment, could be 22 weeks!!! well ive waited 3 years so 22 weeks a doddle, lol
Hi Moggie,
I am also waiting for a rheumatology appointment so that they can look at the possibility of me having Lupus instead or aswel as MS. I do have the rash accross the chheks and bridge of the nose but when I had my bloods done for it they were negative. But the GP and Neuro are both fairly confident that I will get a Lupus diagnosis. To be honest, I don’t really want Lupus either…sounds blo*dy horrible!
As for the MS or neurological diagnosis. I’m waiting for my 2nd brain scan and spine too.
I am hating the waiting though…as we all are I guess!
Good luck,
Mandymoo
The danger of assumption! And of course 99.999% of patients wouldn’t know to ask. Thank heavens your GP is on the ball!
I hope it gets sorted out one way or the other very soon.
Karen x
Hey Moggie - wow how good is that - a gp who is on the ball. Fingers crossed you’re at the end of your diagnostic journey and can soon get the help you need.XXX
Hi Moggie,
I have SPMS and also have Lupus SLE. There are different types of lupus, showing different symptoms, I suggest you google Lupus and find what the differences are. I sincerely hope you haven’t got Lupus.
Wishing you all the best and please let us know your results.
Janet
x