Joining the dots. Hospital multi disciplinary meeting?

[butch54]

Hi

I am a 46 year old male . 2 years ago I had a nasty infection following minor surgery, since then I have not been right. I have had fatigue , joint pain, pins and needles, tendon pain and developed a gluten intolerance and Reynauds. I am ANA positive with both SCL70 (scleroderma) and Anti SM antibody. I am under a rheumy who has had me seen in the scleroderma outreach clinic. I have been prescribed placquenil which has helped but still no diagnosis. The rheumy has not really mentioned the anti sm which I understand is quite specific for lupus.

I have recently been hospitlised with perforated diverticulitis which was not there a year ago. So now I am under the rheumy, the colorectal surgeon and the gastroenterologist but I don't think My of them get together to find out if my issues are linked. Does anyone have a similar experience and how do you get the drs to get together and discuss you issues as a whole ?

[Purpletop]

Unless they are all in the same clinic, it is unlikely that they will meet to discuss. You will need to be the "project manager" and ensure they keep up to speed with what's happening with you. It isn't easy but it is doable, it's just time consuming!

[misty14]

Hi Butch

So sorry to read of your serious health problems. I am under the care of several Consultants and reiterating what Purpletop has said , you can get them talking to each other as long as they are in the same hospital. I'm very fortunate that mine do. You also need to ask your Rheumy about the antibody test you've had for Lupus and diagnosis. If you show them you want answers they are more likely to want to help you. Good luck.

[Hidden]

I am a 58 year old male diagnosed last year with SLE. I also have Ulcerative Colitis which is in remission at the moment and was first diagnosed 5 years ago after 13 months of flare.

Both of these afflictions are similar in the way they affect the body, have very similar auto immune problems and are treated with very similar drugs which is fortunate, although each is treated by different hospitals! To add to this I am type 2 diabetic which rules out steroid treatment!

It would be great if the consultants could coordinate their treatments as they rely on me to give information on other treatments I am receiving including potential drug interactions!

[Cann]

I think the only way is to ensure you are the responsible one for informing all the doctors/clinicians that work with you and going by your gut feeling if you feel one is not doing what is right for you.

I nearly died from treatment, so now I am extremely cautious in what I take and let doctors do to me, because remember, we are all different and we all react differently to different treatment, so how on earth can doctors get it right every time - they can't and I was one example of that!

[butch54]

Sorry to hear of your terrible experience. I too have a history of twice being re- admitted seriously ill having been discharged from hospital. It seems from the many other replies it is something you have to do yourself which is difficult with the complexity of autoimmune disorders.