whooooooo

[littlemissshy]

appointment for the first time is in 2 hours, hopefully they will have some answers, wish me luck!!

[sandycharlie]

good luck....hope you get sorted...xx

[littlemissshy in reply to sandycharlie]

Hi, thAnks. Well firstly I was sent to an adult rheumatologist and was meant to go to a child's rheumatologist. Then I was sent for bloods and fainted once and nearly did a second time, I went grey and worried the blood people stomach they had to run and get a nurse....all ok now though, will be getting results in a few days....

[Rp321]

Did they give you any help/ medication to deal with the raynauds?

[littlemissshy]

Nope, apparently apart from being a 'nuisance' it's not what they're concerned about?!

[Rp321]

Sadly that's the attitude many doctors take - yes they need to check for anything else and yes if there is something it needs to be 'dealt with' - however for those of us with primary raynauds who have it rather severe it's still a condition that affects people's life's quit a lot.

I found before I got to see some one who actually helped with the raynauds, it controlled me (as much as I tried not to let it), but since getting medication and some one who knew what they were talking about when it comes to raynauds, and who really supported me - I control raynauds and go about my day how I like ( obviousally with the usual raynauds adaptations, but that's just normal now).

So what I mean is yes I do really feel for those people who have associated conditions, it must make things even harder, and yes you need a blood test etc to check for them. However doctors also need to recognise primary raynauds is not always just a nuisance but is a recognisable condition in itself. But with that recognition and support (weather it be medication, life style changes or both) it can be managed rather than just written off and told to try to keep warm and 'ignore it' !

This site is great for sharing idea of how to keep the raynauds at bay, however Not everyone can find this site(I found it years after diagnosis and struggling). I feel for those newly diagnosed with primary raynauds who are struggling but are just told it's simply a " ,nusciance", it's makes you feel inadequate or weak for not being able to carry on as normal.

More needs to be done to help those with primary raynauds - I'm one of the lucky ones who eventually (after years of struggling) got referred to that help (the royal free ) but I'm sure there are loads of people who haven't.

[Rp321 in reply to Rp321]

Sorry rant over now

[littlemissshy in reply to Rp321]

Yeah, it is annoying, what we need is a Dr who actually suffers from it... I try to control mine, but its hard. Yes, I think we should raise awareness of the site and similar ones. Thanks for replying, it is definitely worth a rant

[sandycharlie]

sorry to hear you not getting any help from the doctor...I go to queens hospital burton and my doctor suffers from raynauds herself.....it makes a big difference but I must say I am getting loads of tests done to see what stage of raynauds and scleroderma I am at....I really hope your parents can get you sorted with a better doctor...take care xx

[littlemissshy in reply to sandycharlie]

Hopefully the rheumatologist in Cardiff will be better, and as for Dr s , where I go, the one I'm with is nice but not amazing at it, the others aren't so nice....