Fustrated

[Emfrenette]

Just need some guidance , i am getting fustrated with my rheumatologist .. i wait 5 mths to go see him i had a list of things i wanted to talk about everything i mention he tells me it has nothing to do with my condition .. i was diagnosed last year with secondary reynauds,and Crest syndrome but he says ",benin" form of it limited to my hands. Last appoimtmemt he tells me my edenscopy results were abnormal i was told i had GERD and gotnput on pantroprozol and pretty much ..here news meds to go on called "plaquenil" and tells me see you after xmas ! So the list of things like swollen pitting legs , head pressure/fullness and swooshing sounds .. neck and middle back pain, feet hurting in the morning . Iregular heart beats . Etc .. who can i turn to do? any of you have these things happening with this condition ? I know auto immune is kinda of all over and happens whenever but i dont get any anwers exept dont worry be happy live your life stop stressing .any suggestions would be apreciated !

[Irene55]

Is it possible to ask for a referral to see Professor Denton in the Royal Free Hospital in London?

He is the best and is in charge of research into Scleroderma. You should be able to find information about him on this site.

If you are lucky enough to get an appointment, write all your symptoms down beforehand. It is so easy to forget things in the surgery. I saw him years ago and took a list. When he had discussed several things, I looked at my list and saw that he had covered everything. So he is very thorough.

I hope you get some answers soon.

Good luck.

[cagol]

Sounds really tough. I feel for you! That said, the symptoms you describe don't sound autoimmune, except the reflux. I'd go to the GP instead to ask about swollen pitted legs and irregular heartbeat and not mention the Raynaud's or CREST. Good luck!