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Biomarker for Diffuse Scleroderma skin has been discovered!


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Can anyone answer these questions please?


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#1 queenie

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Posted 29 January 2011 - 02:59 PM

Can anyone help me by answering the following questions please!

1- Does scleroderma cause problems with dental extractions?
I have had a few dental extractions lately and each time I have suffered
severe infections not of the socket but of the lower mandibal causing pieces
of the bone to rot. :(

2- Does scleroderma cause outwards curving toes?
When I put my feet together pointing to twelve on a clock the toes on my
right foot all point towards 2 on the clock they are all beginning to bend
outwards from the lower joint and it is causing me problems now with shoes. :wacko:

3- Does scleroderma cause a painful bruised sensation around your nose?
For the past few days I have this bruised type pain around the bottom of my
nose, cheekbones and across the bridge of my nose. It is really tender even
to the gentlest of touches even though I have not banged it or anything.


I would be grateful for any help or advice I can get here as I am awaiting a reply from a scleroderma specialist as I am not under a specialist yet and feel as though I am taking up too much of my general practitioners's time and although she is great I try not to run to her with every little thing. <_<
Can I just thank everybody in advance for any replies to this as my hands are flared up at the moment and it is quite painful to type. :thank-you:

#2 Joelf

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Posted 29 January 2011 - 06:07 PM

Hi Queenie,

Sorry to hear that you've been having so many horrible and painful symptoms.

Please bear in mind I actually have no medical training (although I do enjoy telling my doctor how to do her job! ;) ) but I understand that Sclero can cause all sorts of dental problems. The medications you are taking can also have an adverse effect on extractions; for instance, I'm taking Alendronic acid to counteract the lack of calcium due to steroids and my dentist was absolutely horrified as that particular medication does cause the bone to crumble after an extraction and can cause an infection such as you describe. We have a link to dental involvement which I hope you'll find helpful.

Quite a few of our members are suffering with toe curling and foot problems in various forms; I think it's often part and parcel of the skin tightening process and there is a thread HERE which describes symptoms that are similar to the toe problems that you're experiencing and which I hope will help you.

I must admit that I've never experienced the feeling that you describe around your nose area; it sounds very unpleasant and worrying and must make you feel really rotten...I'm so sorry. Sometimes Scleroderma can be a bit of a red herring as we tend to blame it for any other health problem which could well be unrelated; trust me, you're talking to one of the world's worse worriers when it comes to unexplained symptoms!! ;)

I know you've said that you really don't want to keep bothering your doctor but I do think that if there are health problems that are worrying you then you should consult her; after all, that is her job and you should never be made to feel that you're wasting her time as you do have a chronic and very debilitating illness.

I do hope that this post has gone some way to help and explain things to you; do please let us know the result of your doctor's visit if you decide to consult her and also of course when you get to see the Sclero specialist.

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#3 suze932

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Posted 30 January 2011 - 11:07 AM

Hi Queenie

I have Limited SSc and also have Sjogrens Syndrome as an overlap autoimmune disease, symptoms dry eyes, mouth and elsewhere! I have had to have several teeth extracted and several gum abscesses due to Sjogrens. Both the dentist and Sclero rheumatologist told me that dental problems are common and that it is essential to see a hygienist regularly, to keep things under control. :D

I also have problems with my feet, both large toes have the bending over typical of bunions. Toes are always red and sore and also point out of line, whilst curling under. Loss of the 'cushion pad' of flesh beneath the ball of the foot is, I understand, typical of a combo of arthritis and Sclero and makes it feel as if you are walking on marbles. Well padded soled shoes, with room to move the toes make things a lot more comfortable.

Sorry if this sounds a little muddled but my typing skills have diminished greatly since finger ulcers.

Don't hesitate to chase up a referal to a specialist Sclero consultant as this has changed things dramatically for me as the overlap diseases are also taken seriously, which helps understand this often complicated disease. :emoticons-yes:

Good luck with finding a specialist soon.

Keep warm.

#4 Joelf

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Posted 30 January 2011 - 12:14 PM

Hi Suze,

Welcome to these friendly and informative forums!

We've got a link to Digital Ulcers which I hope will be of help to you.

I'm looking forward to reading your posts and getting to know you. smile.gif


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#5 Amanda Thorpe

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Posted 31 January 2011 - 05:14 PM

Hello Queenie

Not only are some of my toes curling to the right but because of tight skin on the foot and calf I walk on the outside of my right foot because I can't walk with it flat on the floor. Loss of foot padding in scleroderma is very common as is foot pain unfortunately! It's time to get creative with footwear maybe even going up a half size or more.

I can't remember whether you're being referred to a scleroderma specialist or not, if not please get a referral as soon as possible.
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#6 Amanda Thorpe

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Posted 31 January 2011 - 05:34 PM

Hello Suze

You have my sympathies with the finger ulcers. I have a big ulcer on my right foot and a baby one on my left and oh boy do they hurt! I managed to go 4 years without an ulcer then decided to have 2! Mind you they are beginning to heal well with the help of the lovely district nurses who come and dress them twice a week.

Take care and keep posting.
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#7 enjoytheride

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Posted 02 February 2011 - 03:31 PM

I have have that sort of thing with my nose- when I have a bout of inflammation that causes the calcinosis to flair up, and my eyes to get sensitive to light, etc, my nose also gets sore. I'm not sure what exactly makes this happen but I do know I have Raynaud's that affects my nose and face. So I try to be as careful as I can be with keep those areas warm and sheltered. That seems to have helped- it's always hard to tell if some action is successful as this illness seems to wax and wane on it's own.
I just finished crocheting a hat that has a pull down face shield that is working well. I have balaclavas for out side but they interfere with breathing too much to be comfortable inside.

#8 queenie

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Posted 02 February 2011 - 06:51 PM

Hi all,
Just a quick update; have found a specialist who is willing to see me, received a letter back today :jump-for-joy: :emoticons-yes: so all I have to do is give the letter she has sent me to my general practitioner as she has to do a referral and she will send me an appointment. At last hoooray :D
Will let you know what happens when I have been to see her, I am so relieved at last.
what a :happy-day: for me today.
hugs to you all and thanks for the support
:emoticon-hug: :thank-you:
queenie

#9 Joelf

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Posted 03 February 2011 - 12:22 PM

Hi Queenie,

I'm so pleased for you; that's really good news and you must feel very happy. :VeryHappy: :jump-for-joy:

Roll on when you get your appointment! :emoticons-yes:

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#10 Amanda Thorpe

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Posted 04 February 2011 - 01:38 PM

Hello Queenie

Fantastic! :emoticons-yes: Do let us know how the appointment goes!

Take care.


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#11 queenie

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Posted 05 February 2011 - 08:19 PM

Hello everybody :temper-tantrum:,

Just a quick update,I had yet another dental extraction last week they filled me with iv antibiotics before the extraction so I thought all would go well this time. But surprise, surprise, on day three I had to return to the dental hospital as the pain was excruciating they informed me I was in so much pain because a fragment of bone had broken off and was protruding through the socket. So with some anaesthetic they removed the fragment :barf:

And now I am going to have to go back as there is a second fragment of bone protruding through the side of my gum. I am hoping I will not need any more extractions in the future as since my diagnosis of scleroderma I have never had so many complications with tooth extractions and it literally takes 12 weeks for the socket to heal. :(

Take extra special care of yourselves.

Gentle cuddles and love :emoticon-hug:
Queenie

#12 Joelf

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Posted 06 February 2011 - 02:10 AM

Ooh, poor you, Queenie; that extraction sounds really agonising. :(

I do hope they can remove the other fragment of bone without causing you too much pain and that your gums don't take too long to heal successfully afterwards.

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#13 Amanda Thorpe

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Posted 06 February 2011 - 02:59 PM

Hello Queenie

OUCH! You know scleroderma is one bizarre disease, you couldn't make up an illness that can effect you internal organs and mess with your teeth...how random can you get!

Take care and keep posting.
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#14 tisonlyme

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Posted 08 February 2011 - 05:03 PM

Hi Queenie,

I can't help on the dental extractions but I do have an issue with my feet/toes. It doesn't help that I was born with dodgy toes anyway but the SSc seemed to make the problem worse. I had an operation a few years ago to shave bone from the side of my feet (base of the big toes)and to lengthen the tendons in my other toes to try to get them to lie straight. Recovery was bit longer than they expected but the operation on the left foot was a success - the doctor wants to do the right foot again but while it doesn't hurt I keep saying no. My picture shows my passion to toe socks that I discovered after the operation - the first pair were a joke present from my sons but now I have loads of them.

Hope you have better luck with future treatments and your doctors are able to help.

Take care,

San


#15 uknlv18

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Posted 09 February 2011 - 05:37 AM

Hi Lori, sorry to hear about your tooth problem, I hope it clears up soon and you don't need anything else done for a long time. I have an appointment with the dentist on Friday and am a bit scared, hopefully it will be all clear and I won't need any work doing.

Hi San, nice to meet you and I too have loads of toe socks, I love them, I was given a pair as well as my toes were always cold and a friend thought they would help. And they really seem to in my case, living in the UK and for me the year round cold and dampness, my feet and hands were always cold. I am from Las Vegas originally and I do miss the warm weather.

Hope you feel better soon Lori, and best wishes for everyone that they have stress free days!

Cheers
Jean

#16 Amanda Thorpe

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Posted 09 February 2011 - 10:25 AM

Lovin' the toe socks San!

Take care.
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#17 queenie

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Posted 10 February 2011 - 06:42 PM

Hi san,

I might just invest in a couple of pairs of the toe socks as my feet are always like ice and so painful have tried many different types of socks but never the toe socks. :thank-you-2:

Take care love and hugs queenie :emoticon-hug:

#18 uknlv18

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Posted 12 February 2011 - 09:59 AM

Hi queenie,

I get my toe socks on line; they have a really good selection of all kinds, lots of the pretty designer ones but also some good old black or white ones! So you can get them for every occasion. Please send me a PM and I'll let you have the details of the company from whom I buy them. I even wear mine with sandals, I know I am weird but my feet get sooo cold even in the summer and I don't always want to wear trainers or closed toe shoes, so I still get my feet and toes out :emoticons-line-dance:

But look online they are usually a bit cheaper there.

Cheers
Jean

#19 tisonlyme

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Posted 15 February 2011 - 05:38 AM

Hi ladies

I just LOVE my toe socks.. and they really are soo much warmer than regular socks.. you can get them most places - I've even found some in local pound shops.. just need to check the leg length on some as they can be quite short.

If you fancy a go at 'extra wacky' there is a website that does them in 3s rather than pairs.. they advertise them as a 'pair and a spare' but in fact they are 3 different coloured socks.. the ones I have from them are a red/white stripe, blue/white stripe and orange/white stripe - the toe bits incorporate all 3 colours.. soo much fun and quite a talking point when I go shoe shopping... keeps everyone smiling :D

Hope you find some that you like.