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Recently been diagnosed with Scleroderma/Raynauds


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#1 mickey1968

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Posted 05 February 2012 - 10:22 AM

I was diagnosed with Scleroderma (diffuse) in September 2011. I had been suffering from water retention since Jan 2011 (GP did not give me anything), I also saw a Rheumatologist in June 2011 and all bloods and kidneys were fine; I just seemed to go down hill over the summer holidays, which then culminated in being admitted to hospital in September 2011 with an acute pulmonary edema which then followed with renal failure. Luckily this is acute so they say it is recoverable from. I have a PD catheter in as my function at the time was very high, but as it has now stabilised they are looking at removing it over the next couple of months.

I had my most recent heart check in January and it is returning to normal; the consultant said I am a strong lady (I will not let this illness get the better of me).

I have been off work since and am looking at going back to work within the next month, as so fed up of looking at the four walls. Due to the time I spent in hospital and at home resting I have muscle wastage and am trying hard to gain this back, but have been told it can take a while, it's quick to lose it, but slow to put back on.

I have an appointment at the Royal Free on 9 February. I think I have come to terms with the illness (was a shock at first), but just hope my children don't get it.

Michelle

#2 Joelf

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Posted 05 February 2012 - 11:39 AM

Hi Michelle,

Welcome to these friendly and helpful forums!

I'm sorry to hear that you've recently been diagnosed with Diffuse Scleroderma and have suffered a pulmonary edema and a renal crisis. However, it is good news that you have an appointment at The Royal Free Hospital. I am a patient there myself, so can recommend them as they have the expertise to deal with such a complex and unusual disease.

I'm glad you're feeling that you're beginning to come to terms with this illness and now that you've found our forums and joined our community you'll find that you'll receive lots of help and support from our members who do understand the problems with which you're suffering. Do keep posting and let us know how you get on with your appointment on 9th February.

:emoticons-group-hug:

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#3 Amanda Thorpe

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Posted 06 February 2012 - 08:38 AM

Hello Michelle

I have just had to reschedule my appointment at the Royal Free from the 9th! Shame as we could have met up! I also have diffuse and have been looking at my 4 walls for 5 years, well it will be 5 years in August. I retired in October 2008 on ill health grounds and quite enjoyed becoming a pensioner at 40, considering the economic climate I'm gonna enjoy my pension now! :lol: Now this does not mean you won't go back to work, everyone with scleroderma is different, for example Jo goes to the gym every week so how about that!

The Royal Free are wonderful and you'll be in good hands when you get there, let us know how you get on won't you?

Take care.
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#4 Joelf

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Posted 06 February 2012 - 01:25 PM

Amanda's absolutely right, Michelle; I have Limited Scleroderma with lung involvement, but I was very fortunate as it was diagnosed and treated very quickly. Not a day goes by when I don't thank my lucky stars for the treatment I received and I can still have a good quality of life and can go to the gym and do my Zumba class (I'm pretty useless at Zumba, but that's nothing to do with my having Scleroderma; more to do with me being the most unco-ordinated being on the planet!! ;) :lol: )

Trust me, Michelle, you can still enjoy life after Scleroderma; even if at the time of diagnosis it seems like the end of everything.

Best wishes,

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#5 Shelley Ensz

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Posted 09 February 2012 - 06:49 PM

Hi Michelle,

I'm just dropping by to welcome you to Sclero Forums. It sounds like things happened quite suddenly for you. How did your appointment turn out today?

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Warm Hugs,

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#6 mickey1968

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Posted 25 April 2012 - 02:53 AM

I had my appointment at the Royal Free and saw Professor Denton who was lovely. It was quite funny he asked if I wouldn't mind him taking extra bloods for research and I said no that it not a problem and when I went down to give the blood I thought they would take a couple extra, but they took ten in total :lol:.

He has put me on Mycophenolate mofetil albiet a small dose of 250mg twice a day because of my renal failure. My joints/muscles are a bit more achy and my skin has got a bit tighter since February, but I think the illness hadn't fully shown itself, but I am managing to cope with it, just get impatient as go to do things I did before and can't. My last kidney function (March) was creatine 221 and percentage upto 22 which was up on October's which was 512 and 7%. They removed my PD tube in March also as the kidney function was improving, so fingers crossed when I go for my next bloods at the renal unit next week it has improved a bit more. I also started back at work just before the last spring holiday doing 2.5 hours two days a week and after that increased it to 2.5 hours to three days a week. I work at a school, so by July hoping to get this up to four days a week, but have found that 2.5 hours a day is enough at the moment; feels like I have some sanity back and not looking at four walls anymore.

I got the okay from the consultants to go on holiday, so we are going in July to America (parents in law own a villa) and managed to get some good insurance that covered me for Scleroderma, Renal Failure, Blood Pressure and Raynauds, so really looking forward to relaxing, chilling and a change of scenerey and spending time with my husband and kids as they have been through a lot as well.

I have my next appointment at the Royal Free on 14 June; I am hoping that if my kidney function is still improving he will up the medication slightly.

Thank you all for your replies, I just can't believe so many people suffer from this, from something I knew nothing about before I know a lot more now.

Michelle

#7 Joelf

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Posted 25 April 2012 - 05:37 AM

Hi Mickey,

I'm so pleased to hear that you had a good appointment at The Royal Free and that you're feeling much more positive now. At least you can have confidence that you're receiving the best treatment possible and that you will be strictly monitored throughout this complex disease. They do like to take lots of different blood samples at The RF; my husband was there with me one time standing around minding his own business (he doesn't have Scleroderma) and they grabbed him and before he knew it they'd taken three phials of blood from him as a control!! ;)

Have an absolutely super holiday in America with your family!!

Kind regards,

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#8 Amanda Thorpe

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Posted 25 April 2012 - 01:10 PM

Hello Michelle

Prof Denton has a very nice way about him, no ego which is rare considering how much he knows about scleroderma!

Well done on returning to work, I never got that far, I went off sick July 2007, got diagnosed August 2007 realised February 2008 I'd never work again and retired on ill health grounds October 2008. Now it's 2012 and I know retirement was the right thing as I can't even go out on my own. Funny how scleroderma affects all of us so differently.

I hope you continue to feel better and keep posting.
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