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Biomarker for Diffuse Scleroderma skin has been discovered!


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Losing Balance


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#21 judyt

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Posted 30 May 2012 - 08:13 PM

That's right Mio, don't forget the good bits. Your skin is softening so you can bend more easily, my Raynauds is absent but that's because I am getting so old!!!! I don't much like remembering I am getting old but I do enjoy feeling warmer for the first time in 40 or more years.

In the same vein, we decided to sell our house by the sea because it has stairs which I am finding exhausting. That is sad because our situation is fabulous, but because it is so great here we sold easily and at an excellent price. In return we have found a lovely one level home right by the water again. So sad to go but exciting to anticipate a lovely new home and I can't wait to be able to go to the laundry room without going down and up the stairs.

So this is a silver lining day
Hugs and best wishes
Blow that headache away

JudyT

#22 miocean

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Posted 31 May 2012 - 06:09 AM

Judy,
I know what you mean about stairs. We have 5 levels!!!. There are broken into stages but the laundry is on the bottom. For years my husband did it all but now I am able to carry a small load up and down. Who ever thought one would get excited about something like that!

And another milestone last night!!! I was able to thread a needle and do a small repair on a blouse. I know it sounds so minor, but those of you here will understand.

Best wishes on your move, the reason we stay here is the water, too.

miocean
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#23 JeannieD

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Posted 31 May 2012 - 03:30 PM

Hi everyone,

This is my very first post here - I was browsing around and this thread caught my attention.

I'm 44 and was diagnosed with Scleroderma in 2000. I'm very unsteady on my feet - I need help when I go out most of the time, otherwise I've been using a 4 pronged cane. I'm afraid of falling and getting hurt, and as a result I'm pretty much housebound and agoraphobic. My fiance does the grocery shopping , and he calls me every night before he leaves work to see if I need anything. I do most of my other shopping online - gifts, clothing etc.

I'm in the process of finding a new neurologist because I don't like the one I've been seeing. I will bring the information I found here and raise the possibility of this with my new neurologist.

It's nice to find this site, and I look forward to sharing and receiving info with others with similar issues.

#24 judyt

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Posted 31 May 2012 - 06:45 PM

Welcome Jeannie,

So nice that you have found us and decided to post. Yes lots of us here are housebound either some or all of the time. For all sorts of reasons too.

Being wobbly is probably partly age and partly other causes which affect us perhaps more than other people. I have had periods of instability for many years some of it caused by inner ear problems which can affect balance and cause vertigo and also because I have had a tiny stroke in the balance area of my brain. There is nothing anybody can do about either cause so the Neurologist says but I find it easier to live with just knowing what the problem is.

Best wishes
JudyT

#25 mando621

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Posted 01 June 2012 - 05:18 AM

Hi.
This topic is interesting. I have been more klutzy than usual, yet I still have good balance overall.

I ride a unicycle and I've had it out a couple times this year already. I did get a new helmet for bike riding since I don't feel as confident as I used to with my balance. I think it is more age related. I'm worried that if I fall I will do damage. I've been riding the unicycle since I was 16. That makes it 33 years of riding this summer. I would like to learn how to stay in one place and go backwards, but I'm a little nervous of falls.

Ears play a big part of balance, and I have continual ringing in my left ear, which started about the same time everything else did with my UCTD. I haven't had the vestibular dizziness that my husband has had where he couldn't even walk without getting ill.

I am dropping more things, and I don't know if that is not paying attention, or if my fingers are getting stiffer and smoother.

My physical therapist years ago said there are exercizes to help with inner ear issues with dizziness, and chiropractors usually know those too.

Mando.

#26 Joelf

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Posted 01 June 2012 - 05:36 AM

Hi Jeannie,

A warm welcome to these forums!

I'm sorry to hear that you've had balance issues; it's a horrible feeling if you think that you're going to fall and I think it's very easy to soon lose your confidence because of it.

I hope that you get more help and advice from your new neurologist; we do also recommend that if possible our members consult a Scleroderma specialist as sadly many rheumatologists do not have the expertise and knowledge to deal with this complex disease.

Now that you've found our forums and joined our community, I'm looking forward to reading more of your posts and getting to know you.

Kind regards,

Jo Frowde
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#27 debonair susie

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Posted 01 June 2012 - 10:17 AM

Hi, my "fellow Siouxzie"!! Yes, I'm a Susie too! lol

I am SO glad you brought this thread up, since it dated back to 2007!

It was nothing that I could apply (then), ,as I wasn't troubled by the symptoms I now experience.
For several months now, I have had SOB, light-headedness, dizziness, trouble with my balance,
Blood pressure issues, etc...so I made an appointment and saw an ENT, who put me on diuretics,
which really helped. However, when I was given the hearing test, I was found to have GREAT hearing
and no issues, in THAT regard.
Sadly though, my falling continues, though I'm VERY careful and have been fortunate NOT to break any bones,
yet DID sprain my foot, some weeks ago.
In the meantime, I had noticed some symptoms and told my rheumatologist, who told me I had "poor circulation" (feet
were blue
and I was getting "hard bumps" on my toes, so she prescribed a second BP medication, as the other BP med I
was taking the highest dose. With adding that medication, she asked if I would mind seeing a PA (physician's
assistant), so I did, in mid-May, so she could see how I was doing on that medication. While there, I asked if she
look up the results of the echocardiogram I was given in mid March; she then told me that my Pulmonary Hypertension
hadn't changed too much, as a matter of fact, it had gotten a bit "better". That diagnosis was news to me! I told her I
was not informed that I even HAD PH! Then I told her about the above that I had been experiencing and that would explain
those symptoms!
An aside...had I known of the diagnossis of PH, I likely would never have gone to the ENT! This "puzzle" (for me) has now
come together so I no longer question WHY said symptoms and falls, etc. Though my PH has been diagnosed as "mild", I
wonder why my symptoms are so pronounced....
Anyway, I made an appointment to see a pulmonologist; originally, I wasn't going to get in until mid July, but received a call
last week letting me know there had been a cancellation and my appointment was being changed to June 8th, which is this
next Thursday! I am THRILLED to be seeing the doctor I am, because he is the "go to doctor" for PH!!! I saw him a few years ago
and he scheduled/performed the right-heart cath on me!
A few hours before I see him, I'm to have a chest xray and then a PFT. I will post after about the appointment.
Special Hugs,

Susie Kraft
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#28 jad12

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Posted 01 June 2012 - 09:54 PM

Let us know how it goes. At least you have an explanation!

#29 Amanda Thorpe

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Posted 03 June 2012 - 12:50 PM

Hello Jeannie

Welcome to the forums and sorry I am so late in doing so.

Housebound? That's me! I use an assisted wheelchair out of the house and need someone to push is so I can't go out without anyone else. I can't use canes, crutches, or a self propelled wheelchair because of sclerodactyly and fatigue. For 5 years I have spent most of that time inside my own home on my own. Thank goodness for forums like these!

Have you arranged a neurology appointment and are you under the care of a scleroderma expert?

Take care and keep posting.
Amanda Thorpe
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#30 KayTee

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Posted 05 June 2012 - 08:23 PM

Thanks as always for this topic. I thought it was just perhaps stiffness but I have felt very wobbly the past couple of years and am definitely in the eyes to the ground category. Thank goodness I have a one level house - but it's on a hill. well, more precisely lots of hills. But I do some walking, eyes down, and hope no one thinks I'm not looking at them and saying good morning because I'm grouchy.
Kay Tee

#31 miocean

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Posted 06 June 2012 - 04:58 AM

Kay Tee,
Good for you that you can do hills, even with eyes down. I am a "flatlander" a term I learned people who live in mountains call those of us who live where it is flat. The only "hills" I have to walk are a slight ramp up to a boardwalk, and a sandy slope up the sand beach. I find those difficult for me today but in the past did climb mountains. It is more my breathing that gets in the way, not so much my balance. I am always very happy to get to my chair or stop and take a breath. I manage short flights of stairs quite well but have l learned to use an elevator when available.

I must be improving in terms of balance. The other day my 3 year old niece asked me if I could stand on one leg (she was learning how in school.) I tried and SURPRISE!, I could. So I showed her the yoga pose "The Tree" and actually was able to hold a very poor version of it for a couple of seconds. I thought yoga would never be in my future due to the stillness of my body and my hands but maybe it is something I will be able to do again. I sure could use the increase in flexibility and the calmness it could bring.

Amanda,
You must be so frustrated to have your independence taken away. You face all of this very bravely and if it wasn't for knowing you for a long time on this forum I would never have guessed how you struggle.

miocean
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#32 Shelley Ensz

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Posted 07 June 2012 - 03:57 PM

Susie, how did your appointment go??

:emoticon-hug:
Warm Hugs,

Shelley Ensz
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#33 Amanda Thorpe

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Posted 10 June 2012 - 04:57 PM

Hello Miocean

Thanks Chickie and right back at ya!

On the loosing balance thing, I fell over yesterday, first time ever and, oh my, ain't it painful? Tried to step outta a dress Ma was adjusting and tipped forward, fell onto right knee, grazed other leg on suitcase and then fell onto forearms. Quite interesting really, since having sclero I've assumed I'd be like a plank of wood and just fall flat on my face as I'm not that bendy. Nice to know I can bend a bit if needs be but I'd rather have found out another way!

I mention this here as my balance is being affected by a medication, not sure which yet, and I stagger backwards, lean forwards and so forth. Oh well at least I've done it once so know it won't kill me...I hope...if it happens again!

Take care one and all.
Amanda Thorpe
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#34 KayTee

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Posted 12 June 2012 - 12:10 PM

miocean:
Good for you with the yoga pose. Sometimes doctors think not getting worse is progress but isn't it wonderful when you can see some progress even it is little baby steps. I used to live in NJ so I'm basically a flatlander at heart and I choose my hills carefully!
Hugs to all.
Kay Tee

#35 debonair susie

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Posted 26 June 2012 - 09:13 AM

Hi,

jad12 and Shelley, please pardon me for being so long in posting about my pulmo appintment (I have had so much on my plate, lately, that I forgot to post back :P ).

As I mentioned, I was to have a chest xray, PFT and then speak to a pulmo directly following; When the pulmo came into the exam room, he asked, "How Are you today"? and I answered "pretty well", to which he replied, "YES, you ARE"!!!...with a big grin on his face. He said, "You know, I LOVE it when I can see people like you and give them GOOD news! Your chest xray was good and the PFT showed your pressure at 21%; 25% is the indicator for Pulmonary Hypertension". He told me that he wants to see me in a year, so I walked out of there very happy/relieved and could hardly wait to share the news with my hubby and friends! :emoticons-line-dance:
Special Hugs,

Susie Kraft
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#36 Joelf

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Posted 26 June 2012 - 10:15 AM

Fantastic news, My Favourite Twin........I'm absolutely thrilled for you!!

:emoticons-line-dance: :emoticons-line-dance:

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#37 debonair susie

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Posted 26 June 2012 - 06:24 PM

Thank You, thank you, Dearest Jo, my favorite twin! I sure do appreciate you AND your awwesome dance!
Special Hugs,

Susie Kraft
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#38 Amanda Thorpe

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Posted 28 June 2012 - 11:15 AM

Hello Susie

I am so sorry to congratulate you late! Fabulous news, just fabulous, couldn't happen to a nicer person! :woohoo:

As for Jo's dancing... :emoticon-dont-know:

Take care.
Amanda Thorpe
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#39 cantuse

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Posted 28 June 2012 - 02:01 PM

I still don't have an official diagnosis, but I recently fell on the hardwood floor in my house and broke my foot. It's what finally prompted me to to take my nagging leg and shoulder pain seriously and get some answers. I also occasionally experience some kind of vertigo when I'm seated or lying down.

The irony of the broken foot is that I was invited out to a dance hall that night but opted to stay home with the pregnant wife and avoid taking any risks. :wacko:

#40 Amanda Thorpe

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Posted 28 June 2012 - 02:13 PM

Well they say most accidents happen at home, apart from the being run over by a bus thing, bit hard on the carpet that, or in your case the hardwood floor!

So where are you on the "finding a cause for symptoms" merry-go-round? Getting on/off/going round a few more times?

Take care.
Amanda Thorpe
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