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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 KeiKei

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Posted 12 July 2011 - 01:57 PM

Hello All,

I've been snooping about this site since I was diagnosed with the above in Dec 2010 (only 7 months ago! Feels much longer) so thought I'd sign up and say hello and let you know how I was diagnosed, in the hopes it either enlightens someone, or helps someone with insomnia…

I first went to the general practitioner's with complaints of ongoing heart burn and indigestion about 2 years ago, which went on for about a year before I returned to say gaviscon was not the answer. I hate going to the general practitioner's. Anyway, he prescribed lansoprazole. When I then told him about my really pretty blue and white fingers, he told me I had Raynauds and to keep my hands warm.

In October 2010, I became really ill. Everything I ate came back up or went straight through me. A week later when the symptoms hadn’t abated, I saw the general practitioner. He told me it was a tummy bug and to lay off the dairy etc etc. So, I went away and left it a month. Did I mention how I hate seeing the general practitioner? So, about a stone lighter, and having become practically engaged to the toilet, I saw the doctor again. By this time, my other half's nagging had finally worn me down, and I showed the doctor my back, which is patchy with hyperpigmentation and hypopigmentation. This had spread over my shoulders and down my arms. Having never seen anything like it before, he called a consultant in.

In December, I saw the consultant. After some poking, prodding, and beard stroking, I was sent on my merry way to enjoy the holidays. A few days later I received a letter saying they suspected I had scleroderma. Oh, and have a Happy Holiday. This was confirmed with a biopsy.

I think I’ve had every scan, x-ray, lung test they could think of, and so far – crooked fingers crossed – nothing major.

I am about 2 stones lighter, and still have issues with holding my food down, however, I am sad to say, I have since broken off my engagement with my toilet. I felt it just wasn’t going to work out in the long run. The other half is delighted to have me back, but not so delighted to see me replacing my entire wardrobe. And for the record, he makes a useless pack mule.

If you've stayed with me this long, I thank you for putting up with my rambling. My name is KeiKei, and I turned 30 this year. Pleasure to meet you. :D
"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#2 judyt

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Posted 12 July 2011 - 04:53 PM

Hi KeiKei,
Welcome to this wonderful site, sorry you have Scleroderma but 'welcome to the club', as they say. I notice you seem to have the most important 'symptom' of all - a good sense of humour! It will stand you in good stead because many's the day we think we might as well laugh because what else can you do in the circumstances.

I first started the scleroderma journey in 1966 when I was 22 - that is a day or two ago now and I didn't have the benefit of a diagnosis until 2003 when I was hospitalised in an emergency. I think it is easier knowing what is going on rather than being treated as a hypochondriac as I alway felt and the earlier you get on to helpful medications the better I think.

You don't say much about your meds. For instance Motilium has been very good for me for keeping my food down and the resulting small increase in my weight. I am not sure about the maxim that you can never be too thin or too rich!! Too rich I can go along with but NOT too thin.


You do have the benefit of Sclero Specialists on your side of the world. We have none here on the upside down side. The closest centre to us is in Adelaide in South Australia and that seems a very long way away when you don't feel 100% in the first place.

Warm hugs and best wishes on your journey.

#3 Amanda Thorpe

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Posted 12 July 2011 - 05:01 PM

Hello KeiKei

Welcome to the forums and the weird 'n' wacky world of scleroderma!

Gastrointestinal involvement is common is scleroderma but effects everyone differently. I have reflux and constipation but thankfully they're both managed with medication, are you finding the lansoprazole helpful?

Scleroderma, as you know, is a complex disease and if you aren't being seen by a scleroderma expert you may want to consider seeing one. The link I have given you contains various specialties so you'll want to just pick out the rheumatologists. The Royal Free Hospital in London is a centre of excellence for scleroderma and being a patient there myself I can confirm that the treatment they provide is first class. You could always ask your general practitioner for a referral there.

I am into my 4th year with scleroderma and there's never a dull moment I can tell you!

Take care and keep posting.


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#4 Joelf

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Posted 13 July 2011 - 12:50 AM

Hi KeiKei,

Welcome to these friendly and informative forums!

Sorry to hear that you've recently been diagnosed with Scleroderma. Thankfully I don't have the gastrointestinal problems so I haven't had quite the same relationship with my toilet as you have, but I can sympathise with the worry of having such a bizarre and unusual disease.

As Amanda has said it's important to be treated by a specialist in Scleroderma and I am also a patient at The Royal Free Hospital. I've been diagnosed for just 2 years now and am also a patient at The Royal Brompton Hospital as I have lung involvement.

I've included a couple of links for you which I hope you'll find helpful and interesting; one is to Hyperpigmentation and the other to Raynaud's.

I'm very pleased that you've found our forums and joined our community where you will find a wealth of knowledge and support and I'm looking forward to reading your future posts. :emoticons-group-hug:


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#5 Jeannie McClelland

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Posted 13 July 2011 - 10:13 AM

Hi KeiKei,

Just popping in to say Hi and welcome you to the Forums. I'm sorry you've been diagnosed with 'our' disease. I also wanted to say I'm sorry your relationship with the loo didn't work out, but it's for the best in the long run. :lol:

As for your husband being a useless pack mule, it's all in the training! Mine was renamed The Sherpa by a staff member at our favorite bookstore (true). Persevere with him.

I'll look forward to seeing you around the Forums.
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#6 KeiKei

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Posted 14 July 2011 - 04:48 AM

Hello all, and thanks for the warm welcome.
Thanks for the links and advice.

In answer to the meds, my primary med is Lansoprazole, which I'm finding an absolute blessing. It's pretty much taken care of the battery acid wake up calls at 3am, though I did have a random episode last week. Think I may have eaten two spuds more than a pig that night, so was probably self inflicted. But the food was just too good to not eat!! The hardest part I've found with this condition is the inability to eat vast amounts in one sitting.

I've also been prescibed Ciprofloxacin, which I am not taking, as I have not re-ignited my affair with the toilet. But they are on stand-by.

The only other med are GTN (Glyceryl Trinitrate) patches for the Raynauds. But they're more hassle than they're worth and I am really reluctant to use them as the side effects are much worse than the symptoms.

I have tried motilium in the past, but that didn't really help. I haven't tried it since things have settled down, so will dig them out of where ever I've put them for safe-keeping.

My boyfriend has been very supportive and nagging when I'm being 'naughty' :P, as he went through something similar when he was diagnosed with MS. So together, we're making a fantastic pair. :lol:

Take care!
"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#7 Amanda Thorpe

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Posted 16 July 2011 - 01:07 PM

Hello KeiKei

That must be some double whammy for you and your beloved. Do you find it a help that your beloved knows exactly what it's like to have a debilitating disease?

I find it hard sometimes that no one around me has any understanding of what it's really like to live with a chronic, debilitating illness. Recently one loved one suggested that I would feel better if I dressed every day. I pointed out the reasons for wearing "lounge wear" around the house and that putting on actual outdoor clothes would do nothing to take away chronic pain or fatigue, in fact it would make it worse as we all know getting dressed/undressed requires physical effort and most days that's in short supply!

Take care and keep posting.
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#8 night owl

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Posted 21 July 2011 - 02:06 PM

Hi KeiKei,

I have had severe Raynaud's since my teens and time has progressed. My hair is grey but I have never tried GTN (Glyceryl Trinitrate) patches. I would be interested to know your thoughts on them.

Gil

#9 miocean

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Posted 21 July 2011 - 10:23 PM

Kei Kei,

You made me laugh and we all can use a good one! :P I am so glad you have joined us here. Welcome :flowers:

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#10 KeiKei

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Posted 09 August 2011 - 06:32 AM

Hi all,
Been a busy couple of weeks. My beloved cousin was stolen away by some man claiming he’ll love honour and do as he’s told for the rest of his life. :emoticon-crying-kleenex: :P
Luckily, despite the gloomy forecasts, the weather was just brilliant the whole day and the bride looked stunning.

I managed to overeat and not have an affair later that evening. Whoo hoo! But am in no hurry to do it again any time soon.

The mental support Beaker lends me is encouraging, however he is much much much more broken than I am. He compares his energy levels to a rechargeable battery. He needs recharging on the hour every hour, and is the one you’ll more likely find still in his dressing gown at 8pm. Compared to him, and looking about this site, I’m not ill. Not really. Lol

I’m the primary breadwinner and carer, and find it really irritating and frustrating when I am unable to keep going, and do all the things I used to, as these days it sends me into a mini coma. And for someone who required at least 12 hours sleep a day before becoming a rechargeable battery, I am amazed I manage to stay awake at all! Beaker is all sympathetic and understanding, which is fine, however things still need to get done, and as the ‘healthy’ one, the expectation that I’ll take care of it is still there. It’s still early days and I’m sure we’ll adjust… or he’ll end up buried 6 feet under in the garden!!

I don’t suffer drastically from Raynauds, just white/blue fingers followed by numbness/pins and needles. No blisters fortunately. I am not fully convinced the GTM patches work, as my hands return to their normal off pink hue after a while without them. The patches take a while to kick in and hours later I get a thumping headache, which is apparently normal. If I go overboard and use two (one on each wrist) more times than not, I have a one-night fling with the toilet.
I suspect I’m not really using them properly, as I’m using them as a last minute resort, rather than a preventative measure. I need to go back and clarify their use… I’m sure I’ve said this before, but I hate visiting the quacks and I really hate taking medication. The idea of pumping my body full of chemicals just doesn’t float my boat. As all the symptoms seem to vary, it might be worth trying them?

I’m currently on a white food only diet, as tomorrow I go in for an MRE (all the paper work has Barium Small Bowel Enema crossed out and replaced with MRE…) So am looking forward to having a tube stuck up my nose whilst they fill me up with various things that’ll cause me to ignite a very intense two night appointment with my on/off porcelain lover.

Fun times ahead!
Toodles.
"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#11 Joelf

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Posted 09 August 2011 - 07:30 AM

Hi KeiKei,

I also suffer with Raynaud's but don't actually take any medication specifically for it; I feel I'm taking enough as it is (my poor liver and I have a very strained relationship now, rather like you and your porcelain friend!! ;) :lol: ) I've never used GTM patches so can't advise you from my own experience. Perhaps it may be worth contacting your doctor again if you're worried about the side effects from them.

What a good thing you weren't on a white food only diet for your cousin's wedding which sounds like a good time was had by all!

I do hope your procedure goes well tomorrow.

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#12 Amanda Thorpe

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Posted 09 August 2011 - 03:51 PM

Hello Keikei

You're a hoot! I hope your procedure goes well tomorrow!

Take care and keep posting.
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#13 KeiKei

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Posted 10 August 2011 - 03:36 AM

Thanks for the encouragement.
I am currently sat at work torturing myself as everyone else happily drinks their tea (I am heavily tea dependant) and eats their snacks. Just a couple more hours ‘til I head off to the horse-pital. Fortunately, the worst offender for snaking is on leave today.
Last time I had to starve for the day for the ‘tummy cam’, she tried to eat a packet of crisps quietly. Have you ever tried to eat crisps quietly? Our friend coughed to cover up the rustling packet, which just made me turn round, and caught her as she stuffed this huge wad of crisps into her mouth! Had to laugh, as it was such a rabbit in headlights look. But more than anything I was touched by their consideration.

Off to smell someone’s tea. Hopefully it’ll keep me going. :P
"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#14 debonair susie

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Posted 20 August 2011 - 11:36 AM

Hi KeiKei!

I absolutely LOVE your humor, your slant on the "delights" so many of us share!

At this juncture, I just wanted to let you know how pleased I am that you are a
part of our Sclero Family. Let me clarify that previous statement: I'm not at all
thrilled that you are ill, but rather adding all that you do, providing humor in a way
we ALL can appreciate.

Please post and let us know how you are doing :emoticons-group-hug:
Special Hugs,

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#15 KeiKei

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Posted 22 August 2011 - 07:17 AM

Hello.

So, three attempts of suffocating me and a blocked, runny nose later, I have survived the MRE ordeal and am hoping they have taken some decent images because I am not subjecting myself to the torturers again anytime soon. (The young nurse in training has hot though! Rrrrrrrr. Ahem.) I do not advise having this check up when overcoming a cold.

As if that wasn’t enough, the nurse then stabbed me and had a moment of panic when she thought she hadn’t managed to hit a vein and I turned an even paler shade of white (Oh my word, there’s no blood! I’m dead!) and went to fetch the doctor.

I swear they do not read the paperwork about your condition when you’re sent for these tests. “Can you lie on your stomach and stretch your arms above your head and hold that position for about an hour.” How about no. The scleroderma primarily affects my shoulders, so any stretching feels like my skin is about to split. Not to mention this tube is irritating the heebe jeebies out of the back of my throat causing me to want to vomit every time I swallow.

Managed to compromise on a position and had to hit the panic button partway through. I thought they probably wouldn’t appreciate me ruining their shiny expensive machinery with the liquid solution they’d been pumping into my tummy.

The rest fortunately went quickly and with concerned faces and steadying arms I made it out of the theatre and into the waiting room. My newly married cousin and her hubbie took pity on me and picked me up and fed me. I must thank them for introducing me to a different porcelain lover that evening.

Has anyone else suffered through one of these?

Off to see the rheumatologist tomorrow and the tummy doctor in September, hopefully with the MRE results. I’ve noticed some peeling, really sensitive and hard skin on the side of my right index finger which hurts when I press it (which I’m pretty much constantly doing now I know it hurts a bit. My masochistic side showing :P). My hands are also feeling a lot stiffer these days.

Does anyone know if massage and the oils help at all?

Off to shop for hand warming devices (and maybe actually do some work).

Ta ta for now!
"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#16 Joelf

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Posted 22 August 2011 - 10:40 AM

Hi KeiKei,

Oh dear, it sounds like you had a lot of fun from your MRE ordeal...not! I never had an MRE but I did have a bronchoscopy which caused me to have extreme head cold symptoms such as you've described. Thankfully it didn't cause a reaction in my stomach though.

My hands can feel very stiff and the nurses at The Royal Free Hospital did suggest using a hot wax basin to soften and make my hands more comfortable. I did do this a few times but quite honestly found it rather a palaver so I must admit I haven't pursued it perhaps as much as I should have done. They also gave me some very useful Hand exercises which are replicated in this link and I hope they'll be of some help to you.

I do hope you have a good appointment with your rheumatologist tomorrow and have an equally good result when you see your gastrointestinal consultant in September.

Roger Rabbit got it about right.....many a true word spoken in jest! ;) :lol:

:emoticons-group-hug:

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#17 Amanda Thorpe

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Posted 22 August 2011 - 12:50 PM

Hello KeiKei

Yikes! I had to look up what a Magnetic Resonance Elastography was a I had never heard of it. Amazing what they can do...as long as they never do it to me! :lol: My bi ventricular ICD is my passport out of the world of magnetic anything!

Take care and keep posting.
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#18 KeiKei

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Posted 22 September 2011 - 08:46 AM

Yeah -- that's the one! I keep looking it up but can never remember the next time someone asked me. D'oh!

I had to look up what a biventricular ICD was. I have to look up just about everything really!

Thanks for the link, Jo. I have tried some of them, and it's depressed me at how bad my hands have become. I paint and am finding it really hard to hold a brush lately. I haven't bothered to pick up my needle work yet.
"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#19 KeiKei

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Posted 24 October 2011 - 10:51 AM

Hi Loki.

Wow. As I'm sure I've written before, I'm not ill!!! :)

I have recently seen an Occupational Therapist, but didn't find it too helpful as a lot of my stresses in life revolve around my commuting halfway across the country each weekend and looking after my rather ill Multiple Sclerosis boyfriend. He's tried to slice off his finger today instead of slicing the bread <*sigh*> And I won't see him 'til Friday now to kiss his boo-boo better.

I have been advised to look at the UK disability living allowance, and it's been suggested I look at getting a cleaner, but quite frankly, the forms are over whelming and I'm not sure I'd be happy for some stranger to clean my house. (CONTROL FREAK!) Especially as we're still moving in (it's been a year already! Where'd the time go?!) There's also loads of DIY and unpacked boxes and therefore clutter. How'd we accumulate so much clutter?!?! We haven't even filled the forms out for the “oh so MS-sy one” yet, and he’s much much much worse than I am. (He’s only able to work part-time, 2 days a week). You need a degree in filling out those forms!

As for treatments, I'm not really on any serious medication/treatment, nor have I been offered any. I guess I don't need any, as everything internal has been given the all clear. I am however, soon to join those of the Royal Free! So they may pick up something that was overlooked by my local hospital. I think dinner and a theatre show might be the outcome of the day. Now, which show to see? I think I've seen most of them already. How'd that happen!?

Meanwhilst, I think I'll treat myself to a lovely two course meal of complan tonight. Yum yum...
"Listen, my philosophy is this: If you don't have a good sense of humor, you're better off dead." Roger Rabbit

#20 Amanda Thorpe

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Posted 24 October 2011 - 03:37 PM

Hello KeiKei

Ma used to help with my cleaning but it became better for our relationship if she did a little less so I now have a cleaner come in. I put it off for ages as I am at home all the time and didn't want a stranger in my home when I am still in it and in my PJ's at that! However, she is an absolute dreamboat, she comes in, cleans like a whirlwind and then goes, she comes once a week for 2 to 3 hours depending on what I need doing and is very reasonable and most importantly she is an excellent cleaner. I can't tell you what a weight off my shoulders it is.

I would encourage you to persevere with the application for disability living allowance, it includes a component for mobility and a component for care, so, for example your boyfriend would apply and then be awarded either the lower, middle or higher rate for mobility and care. The care component is based on how much A N Other (presumably you?) does for him each day, what it is, how long it takes each time and how many times a day. Obviously the mobility component is based on how well he can get around, what aids he needs and so forth.

Apparently you can apply online now, when I first applied in 2008 the form was 50 pages long but I was approved and awarded both mobility and care components and I recently updated my details and the award didn't change. Financially it makes a tremendous difference, it also makes a tremendous difference to me mentally as I don't feel so bad when I can't get our of bed because I am still bringing money into the household albeit a benefit. If your boyfriend was declined you won't be any worse off so you have nothing to loose. Just make sure his general practitioner/Consultant are on their toes so they wax lyrical about what he can't do when they are contacted.

Have a look at www.direct.gov.uk to see more information about benefits.

Take care.
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