scared and lonely

[volvox45]

I meant this to appear in the scleroderma site but it got put into the lung one – so here it is again:

I was diagnosed with limited systemic scleroderma 2 weeks ago (I'm 72) – my only symptom is Raynauds and also a complete change in bowel habits and weight loss which no one has yet connected to the SSc but I'm sure it must be. Various scans etc tell me my oesophagus and lungs are damaged, and I am to have my kidneys and heart investigated. I feel like my body is destroying itself from the inside which is terrifying. Whatever will happen next? I have lots of questions but won't see a consultant for at least 3 months.

One is: why is it called "limited"? Will it always be "limited" or will it spread? Then what will it be called?

Just wanted to have a bit of a wail really! This is a lonely disease, isn't it.

[avtargill31]

Hi, I know what you mean about scared and lonely. When I 1st had my symptoms etc, panic was an understatement. I have secondary Raynaud's and all the silly stuff that goes with that, all I can say is there are folks here that will listen and help if they can. We're having a bit of an informal get together in Birmingham this Wednesday, depending on where abouts you are, you're more than welcome to join us, you can bring a friend or partner to take the stress out of it too.

[zenabb]

Don't be lonely there is a lot of us. Talk to us. It is called limited because it is. It does not get bigger, the symptoms are typical. You seem to be well looked after. Let it continue.

[fairy56]

Hello and welcome to this wonderful site. Whilst you are waiting to see your consultant make a list of any symptoms you may experience, even the little ones, that way when you have your appt you wont forget anything, take care xxxx

[volvox45]

Thank you all – yes I have a long list of questions to take to my next appointment. I wish I believed that "limited" means just that but at the moment new things seem to be turning up all the time. I'm wondering if I can get referred on to the super-specialist Professor Fenton at the Royal Free (near me). I'll have to ask.

[frillyhilly in reply to volvox45]

Hi, welcome to our group. I'm so sorry to hear about your diagnosis. Everybody here understands how frightening it is and yes it feels so lonely. There are a number of groups that get together throughout the country - just ask.

May I make a suggestion about your idea of going to the Royal Free - this is my personal opinion. I think it would be more sensible to start with the local hospital you would normally be referred to because, in the end, it is your GP and your local NHS that will be looking after you long term. If you can afford it, or have health insurance, you could ask for a private referral to your "local" Rheumy - this should get you a much quicker first appointment. Keep the NHS referral as well - there is no point in losing your "place in the queue".

The reason I feel it is best to start local is based on my own experiences. I'm lucky enough to have a main hospital and a local hospital. I have been disabled since 1997 and have had Raynaud's since 2003. Both hospitals really go out of their way to look after and help me out, whether for an outpatients visit, day surgery, general scans, etc. One occasion that has really stuck in my mind happened a few years ago. I was in for a MRI scan, and I met a nurse who had not long been in the profession. She'd seen that I had Raynaud's from my notes and she asked me if she could talk to me about it so that she could get to know how to look after, and what to look out for in, patients with Raynaud's.

I hope your appointment comes through soon. In the meantime, don't forget - you've just got yourself a whole new bunch of friends! :O) xx

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From what ive found out about Limited over diffuse/general etc is that Limited effects the lower limbs ie fore arms/shins etc where as the other types can be anywhere. but limited effects the internal organs as well.