Dr Hughes diagnosed me with Lupus in 93 but GP & St Thomas now say it's scleroderma because of the calcium lumps.

[florence1884]

I am confused because St Thomas explained that scleroderma is to do with the skin but I still feel really poorly, like I have a bad dose of the flu 24/7, literally. I am struggling as a self-employed transcriber and feel like a hampster on a treadmill, working and then collapsing, working and then collapsing. My DLA is due to end in February and I am terrified they are going to say I am not as ill as I said I was. I had six months off last year due to a flare and failed the Atos medical for ESA and had to go to appeal, which I won. It's bad enough being ill without having to worry about being called a fraud and having to fight for benefits. Why can't the powers that be just get the info they need from our GP's and consultants and our medical histories? That way they would know whether we were genuine or not.

[overnighthearingloss]

I have both. And scleroderma can be just as bad as lupus. Depending on what sort you have it can attack organs just like lupus. Have a look on the raynauds and scleroderma community

We are in a new world medically speaking, where budgets seem to be having a greater effect than previously.

In the past your specialist may have been prepared to treat you but maybe wants to shift you to somebody elses budget now.

Its all auto immune related and many of the meds are the same.

I understand exactly where you are coming from ie not being called a fraud. The problem is that if any doctor finds a problem now, there are budgetary implications in treating it. Everyone seems hellbent on making sure that their own budgets are impacted as little as possible

Treating according to need has disappeared and personal budgets are the name of the game. The sickest can lose out if they dont fight back or have someone to fight for them