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kathygirl

Losing Balance

42 posts in this topic

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

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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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

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

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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


ISN Artist

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

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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

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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

 

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


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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:

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Amanda, still waiting on appointments with the rheumatologists. :-/ At this point my determination to my symptoms as scleroderma is a diagnosis of exclusion. I've already had MRIs of the spine, leg and shoulders and everything checks out fine aside from the blood work, upper endscopy, etc. Because I'm somewhat confident of this, I'm been more or less content to wait until I see the doctors. The diagnosis would at least confirm to my wife that I'm not just always making excuses when I'm in pain or fatigued. :D

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