I do not get any help from my consultant at all

[Shirls]

[living-the-dream-ssc-ray]

Ah Im saddened to read this !

I have a great medical team who have been, and are more than supportive to me ! You can always ask your GP to refer you to another Consultant as this is your patient right and choice if you are that unhappy.

I hope that you get this sorted soon as I know how comforting it is for me to know that I am in such wonderful medical professionals hands whilst on this 'not being able to move and turning blue' journey!

[SandraMarie]

When you say you're getting no support do you mean that they don't help you at all, with advice or monitoring your progress? If it's just that they're not answering your questions, it's possible it's because they are unanswerable. Each case being so different and time factors of symtoms evening off or worsening differing greatly. I do feel also that the medical proffession generally are nervous of giving too much information these days, because there people who will misinterpret this and then hold it against them, when circumstances change.

[zenabb]

I agree with SandraMarie.

[dawng8500]

Be specific with your questions. Also remember, YOU are your own best advocate! I agree with SandraMarie. Each case is different. Subscribe to the Scleraderma Foundation website. There is alot of good information out there.

[cookie74]

hi shirls.. i know how you feel, i had my fisrt consultant for 15 years!! i had infusions but thats as far as it went,, i changed 3 weeks ago to a new consultant, and what a change, support,,care,, and difference is unbelievable if you are not happy, move on:)x