Rheumy app today

jordan7j

Hi, had my appt tody, saw a lovely S.H.O who listened to me, and made me feel like I wasnt crazy. She said that some of the symptoms I have could be Lupus, as i have RA and OA already, she was concerned about swelling in ankles, knees, wrists elbows and fingers. She said I am a mystery!!
The consultant came in, and asked a few more questions, he said I am not presenting with typical RA symptoms, and he thinks I have mixed connective tissue disease. He believes the main feature is Lupus, so had lots more bloods done. He also mentioned something about underlying overlap.
I mentioned about the pain in hips and neck and shoulder at night, mening I cant turn on my right side, and he said he wants me to keep on with the tramadol as the next step is oromorph and he doesnt want me to go down that route due to working with babies as it makes you very drowsy. He also thinks I may have sjogrens. He as upped the mtx to 15mg, as main concern is to stop further joint damage. So hoping to get some relief from pain, and some answers from bloods. Take care all, Jay

frogmorton

Hi Jay
phew! after just reading your post I am exhausted! Sounds thorough anyway! Do you feel ok about how it's going??
Overall I would feel reassured myself as they are keeping an open mind whilst treating you too.
Hope you are ok in yourself?
Love
Toni x

jordan7j

Hi Toni, thanks for reply, its all a bit complicated really!! a bit shell shocked at the news, dont really know what it all means yet. I just hope that it can be sorted out. I have no idea about mixed connective disease, he just said its a mix of auto immune illnesses, the most prominent one seems to be lupus, but more tests as usual. Will attempt to look it up on the net. Just worried that it will mean more problems, as I feel ill all the time anyway. Consultant said it doesnt help that I work long hours with the babies, so will have to talk to parents, and rethink things. Take care Jay x

woodbon

Hi, It must have been nice to be listened to feel they are taking everything seriously. Rather a lot to take in though, all at once!
All the same, when you have someone to discuss these things with seriously, it makes a big difference.

love Sue

jordan7j

Thanks for replies, looked up some info, its myositis, amd sclerdoma, are the other auto immune illnesses. They both can affect organs too, can get serious!!!??? But no point in getting in a state about anything til I know more.
Feel constantly exhausted, and flu like, achy etc. as well as awful pain in feet hips hands wrists and elbows. Been hard last week and had both babies for 4 days. By Friday could hardly move. Been going to bed by 8.30.
hoping the methotrexate finally starts to work, and think I need to talk to the parents too.

frogmorton

jordan7j wrote:

Thanks for replies, looked up some info, its myositis, amd sclerdoma, are the other auto immune illnesses. They both can affect organs too, can get serious!!!??? But no point in getting in a state about anything til I know more.
Feel constantly exhausted, and flu like, achy etc. as well as awful pain in feet hips hands wrists and elbows. Been hard last week and had both babies for 4 days. By Friday could hardly move. Been going to bed by 8.30.
hoping the methotrexate finally starts to work, and think I need to talk to the parents too.

Jay
I think you do need to talk to them
They will be devastated to loose you, but cutting down might be enough?
I hope things get sotred very soon
Love
Toni x

jordan7j

Hi Toni, will speak to one parent tomorrow, as dont have any of the babies, and she has to phone me as she is on a course and wants me to have Amelie from 7 am on Tues and all week. I think she needs me to collect her from the school where she teaches and then take her to the other ones house a bit later, It is getting really hard. I dont know what I can really do though, as she works full time, and needs a full time minder.
The other childs mum only usually works 2 days, so its not so bad.
Will phone for blood results in about 10 days, thats if they will tell me them. I dont want to wait until March, its ridiculous not knowing what the diagnosis is for definite.