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New to the board, scared and lots of questions


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#1 old lady

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Posted 08 January 2009 - 03:22 PM

Hi all! So glad you are here!

Two months ago I was found unconscious in the parking lot at work. I didn't remember getting there and have very little memory of the next few hours. The ambulance took me to the closest hospital and I was admitted since no one knew what had happened.

Long story short--my heart is fine, my test for MS showed one band and an elevated myelin basic protein. My ANA was 320 with a centromere pattern. My brain scan showed "punctate changes" in the left frontal lobe which correspond to the origin of a seizure found on EEG.

The neurologist is giving me gradually increasing doses of antiseizure medicine and says I need a rheumatologist. That appointment won't happen for several months.

In the meantime, my balance is awful. My hands turn white and painful from just getting something out of the freezer (let alone walking the dog in the winter cold and wind). The State took my Driver's license and my part time job fired me because I asked for a leave to arrange transportation (at least my full time job is still there!!!)

I am 60 years old and have had joint pain and trouble with the cold for a long time. No physician ever thought it was a problem. They just told me to get better gloves! Does this sound like autoimmune disease or am I afraid of shadows? I am active, eat well and have always thought of myself as healthy.

Thanks in advance for any light you can shed!

old lady B)

#2 Shelley Ensz

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Posted 08 January 2009 - 03:37 PM

Dear Old Lady,

Welcome to Sclero Forums, I'm glad you found us! I'm very sorry for all the health issues you are experiencing, though. It must have been frightening to realize you had been unconscious.

As it happens, your test results do sound like there might be some autoimmune disease process going on. However, I'm not a doctor (I have no medical training at all). Generally autoimmune diseases progress slowly, and it usually takes months to get a first appointment with a rheumatologist. In the meantime it would be a great idea to study more about various autoimmune diseases on our main site, http://www.sclero.org/ and get involved with support, such as here on Sclero Forums, just as you are already doing.
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 pieski

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Posted 08 January 2009 - 03:43 PM

Hi and welcome,

I wouldn't start to panic just yet. Wait to see what the rheumatologist has to say first. It does sound like you may have Raynaud's in your hands, but that is also common in people without autoimmune disease. I use handwarmers and they help a lot when the weather is cold. Good luck to you.
~ Teresa~

#4 Snowbird

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Posted 08 January 2009 - 04:07 PM

Hello Young Lady :) of 60 years

Sorry to hear you've had such a frightful time of it! I agree, it must have been unnerving to be found unconscious and not know why but I'm glad that is behind you now and hasn't happened again. Sounds like that must be a good sign.

If you have Raynaud's, it's really important to keep your hands warm at all times if you can...you might want to consider a nice pair of mitts/gloves just for when your take things out or put things in the freezer because keeping your hands warmer might help lessen the attacks of pain, can't hurt anyway.

I just wanted to say welcome as well and I hope a rheumatologist will be able shed some light on what's going on with you.

You have found a great site for support and information. I hope you keep posting and let us know how your doctors appointments go. Take care.
Sending good wishes your way!

#5 Shelley Ensz

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Posted 08 January 2009 - 04:13 PM

Okay, Snowbird, that's it -- I'm going to knit a pair of mittens for Old Lady's avatar...
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 canon

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Posted 08 January 2009 - 05:45 PM

Welcome old lady,

Sorry you have gone through so much. The incident, seizure and scleroderma diagnosis at about the same time is alot to deal with. It sounds like you are on the right track and things are somewhat under control. Will keep you in my thoughts and wish you a speedier appointment with the rheumatologist. Have you asked them to put you on the list in case someone cancels their appointment? Take care and keep posting.

With gentle thoughts,

Judy
A happy heart is good medicine.

#7 Jeannie McClelland

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Posted 09 January 2009 - 05:49 AM

Hello Old Lady!

Even though you really are a young'un, I guess sometimes we get 'multipliers' on our age like our canine friends. For the cold hands (does sound like Raynaud's), you can have an extra 12 months or so. :lol:

I too welcome you to the Forum, although I'm sorry you needed to find us. You'll find lots of information here on all sorts of things and best of all, lots of new friends who'll be incredibly understanding and supportive. Don't ever think a question is too silly or be afraid to let go and have a rant. We all do, from time to time!

RE: transportation. Do you live in an area that provides alternative transportation for the "disabled" - because of the state taking your driver's license, you'd qualify for it. In my area we have buses that you use almost like a taxi. Some advance notice of when you need the ride is necessary, but that's okay because they are safe, convenient, and usually cheap.

Best wishes,
Jeannie McClelland
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#8 Snowbird

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Posted 09 January 2009 - 10:54 AM

"Okay, Snowbird, that's it -- I'm going to knit a pair of mittens for Old Lady's avata"

Ok Shelley...I sure hope your hands are up to it....you might just be in for knitting alot more pairs than you think here....ha..ha
Sending good wishes your way!

#9 jefa

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Posted 10 January 2009 - 11:35 PM

Hello from another old lady, old lady. Let me join in welcoming you to the forums. The link Shelley provided contains a wealth of information. If you need help finding anything specific, let us know or use the Search Forum link in the purple tool bar to find other discussions on the topic.
Warm wishes,
Jefa

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#10 Nina

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Posted 11 January 2009 - 11:19 AM

Welcome Old Lady , that's funny ~~ but I understand how you could feel that way!
I don't have much to add other than to let you know you have many friends here who just love to lend our support, if nothing else. And yes, please don't get to worring too much at this time ~ it can take a very long time to get a proper diagnosis. Do try to find someone who is knowledgable in this field though, that helps tremendously.
Please visit often and talk about anything and everything ,
Much love,
Nina (DE)

#11 Sweet

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Posted 12 January 2009 - 02:42 PM

Oh Old Lady, welcome! Goodness you have been through too much! I'm really sorry for all that you are going through, and I certainly hope you can get into see a rheumatologist sooner than a few months. Keep calling - be the squeaky wheel.
Warm and gentle hugs,

Pamela
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