Posted 16 August 2008 - 08:42 PM
You sound like you are about to jump out of your skin and with good reason! There is nothing more frustrating than to be suffering and to have no one in the medical establishment listen and help. I hear your pain and frustration. I know your have had your fill of doctors who don't get it but try to get to the one who was mentioned who does understand scler - you may just find that you can finally get some genuine understanding and some real relief. You won't be cured but your symptoms will be managed and perhaps you can be made to feel much more comfortable.
I am glad though, that when you were feeling down and miserable that you did vent to us so that we could be there to support you. I hope that the contact information yields a positive connection for you and that you start feeling better immediately. You are on the right track and we are here if you need more support anytime. Feel better!
Chocolate, It isn't just for breakfast anymore!
Posted 17 August 2008 - 05:22 AM
I would like to tell you my experience. I was diagnosed 25 years ago by biopsy and tissue samples evaluated by experts that I have scleroderma. My symptoms have been mild over the years, I have edema rt leg, severe reflux and fatique are main problems. I have found over the years when I go to the doctors they completely ignore the scleroderma. My feeling is that they just have such a poor understanding of the disease they do not know how to deal with it. Now I have a good general practitioner that listens to me, but recently when I went to new GI doctor that was very rude to me and said to me after I told him about the scleroderma he said almost shouting "You had scleoderma, but you dont have scleroderma now" when I tried to explain to him about it he cut me off repeating "You had scleroderma but you dont have scleroderma now". Again I tried to explain to him and again he cut me off saying, "Well you face doesn't look like it". Of coarse I was in shock at this point. This is why I have tried to avoid doctors over the years, they just dont understand the disease. I was so sick when I went to this doctor, I had lost 10 lbs and was only able to take liquid diet due to the pain, and he treats me this way. I found this forum then and read every post on reflux and got myself straighten out and can now eat well, I asked my general practitioner for reglan and that with prevacid solu tabs are working well. My point is I think it is important to go to doctors that have an understanding of the disease.
Posted 17 August 2008 - 09:47 PM
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host
International Scleroderma Network (ISN)
Posted 19 August 2008 - 01:59 AM
Posted 19 August 2008 - 12:31 PM
I hope you will get the help you need. I understand your fear that the Doctor will disregard your symptoms. When I go into the doctor now I take my husband with me and it gives me more courage to stand up for myself. It is hard for me because I wait to go until I feel so rotten I can not think straight and express myself well. I hope you can do something to relive some of the stress on yourself, and to get yourself the the help you need, you have a large family that needs you to be well. You also might be helped to see a dermatologist to look at the sore on you toe.
Take care of yourself,
I will not go back to that GI doctor. I did have a great GI doctor 8 years ago when I had esophagitis and gastritis I started on prevacid then. But now with my HMO I can not go back to him. But I will find another one that I like.
Thanks so much for the welcome,