Still Unsure of Diagnosis | Arthritis Information

Hi, just found this today, so nice to read you all.... I'm 51, female, diagnosed last year after fairly classic symptons: unable to lift head off pillow, unable to turn over in bed, thighs and buttocks tender, feelings of flu etc. After various visits and a change in my usual doctor I got sorted with a great GP who then referred me to a rheumy, six days later (brilliant NHS) I was being sorted. Started on 15mg steroids and most of symptons went..... but others came and my GP was obviously considering other things. My worse sympton is the muscles in my throat are affected, giving the feeling of a lump in the throat (I don't have a problem swallowing thank goodness), this has been for the last nine months and is horrible. Also get a burning around the ribs which I think is inflamed blood vessels, had blood in my pee on two occasions, acute pain in chest when I sneeze, had cold hands and feet (mild Raynauds disease).... I have a positive ANA (blood test) and a negative RF. The rheumy took me off steroids after 3 months on 15mg in case they were masking something nasty... loads more blood tests, CT scan and ultrasounds of kidneys.... all ok (ish).

I haven't gone back on the steroids, I manage on 75mg diclofenac a day. My rheumy thinks what I have "represents" polymyalgia, and my GP thinks I have Undifferentiated Connective Tissue Disease (UCTD). This means I have the symptons of a CT disease, ie lupus/polymyositis/RA but I don't have the diagnostic criteria!

So, is anyone else in this no-man's-land? I just have to wait and see what develops and in the meantime try and deal with my throat problem and feeling as though I'm seventy. I also am getting my head around wanting it to be PMR rather than waiting for it to develop from uctd to an actual ctd!

Thanks guys, WallisHi Wallis

Welcome to the board. At this point you have a rheumy and a GP and it sounds like they are trying their best. Some of what you said does sound like poly but other things do not but everyone is different. Try to hang in there and keep pushing for an answer.

MrsUK has posted a url for a site in the UK that seems to be a great place to go for answers.

Take good care.

Pat

My Rhumy said the same thing about me....like I might be getting something else and "it" is presenting as PMR. Said the same thing about UCTD. I am at my two year mark and feeling a lot better - blood test are normal but still have pains mostly in my back. Worried about lupus at some point. But what can you do? I have had the antibody tests - I guess you have also. I am just taking extra supplements to try to hold onto my health and staying clear of too many meds. Oh - I am also ana positive. Thank you both so much, and how wonderful to hear a similar story! I'm not alone, hurray! I watch my diet fairly fastidiously and exercise (a yogalates dvd at home is my preferred method)..... one thing of note, I read a study of patients with UCTD to try and determine why some developed into full blown disease and some didn't; there was a marked Vit D deficiency in a high percentage of those who went on to full disease. So.... lots of sunshine and egg and oily fish. The first is sometimes hard in Britain! (I miss California - lived there for five years) Have also read of importance of Vit D with multiple sclerosis, cancer and other nasties... probably does us all good to keep our levels up.

Managed some housework today with only back of thighs hurting. I think I'm better than I was six months ago. Some eye pain tho, will keep tabs on that.

Thanks again, will keep reading... Wallis