I'll start with the EMG. Had an EMG a couple of days ago because my blood work showed an elevated CK which can be linked to muscle damage.
Yikes, that wasn't a pleasant experience. Had to have a needle in the front part of my calf muscle which I think was sending shocks through my muscle (and then she tells me to flex my foot; yeah, right!). And then another one in the inside lower thigh area. Well, the good thing is that I don't have polymyositis.
Then went to a make up artist today to see if she can help to make me look closer to the way I used to. My eyes look strange now because of the stretching in my face (due to the scleroderma). I was getting her to try to create the look of bags under my eyes, because that's how my eyes were.
She said most people come to her asking for their bags to be masked, and here I am asking her to create them!
I just want to look like me again! >:( (I know, impossible, deal with it, right?)
Amber,
I'm sorry. I know I put on makeup everyday just because I have to look at me and I feel better if I look decent. You are so young and I'm sorry you have to deal with this.
Anna
Amber, please don't have any changes made to your face. With sclerodema or any autoimmune, you never know how things will turn out, or might look in the future. Then you not only have your original problem (as you perceive it) and the secondary one of the changes possible due to the work done on your face.
I had Lasik surgery and my eyes are ruined even though they gave me all sorts of promises that nothing wrong ever happens. It's the worst decision I ever made in my whole life. It is my sight I was messing with for heaven's sake. What was I thinking. Please think hard before you do anything cosmetic like. I would like to have eyeliner tatoos but won't even think about that because of what might happen.
I am sorry the EMG's hurt so bad. I have had them several times and some have been worse than others. Some were not enough for me to be vocal and others made me very loud and vocal. Lucy
I am going to be a wet blanket. Don't count your AI diseases before they are hatched. You could still have polymyositis.
Amber - How long have you been noticing the tight skin? I have inconclusive tests for scleroderma and don't know which kind, if any. I have GERD, gastritis, constipation and a few telangiectia on my face and hands. I have no antibodies except for a + ANA and +P-ANCA. Doctor says I don't have anything, yet. I don't notice any skin problems or Raynauld unless it is really mild. I hope you are feeling well. Did they check you for Lyme? Have you looked into the Roadback foundation?
Winnie
And then there's thyroid, with Graves Disease, and thyroid eye disease. I could look like Rodney Dangerfield with the big bulging eyes. I think I'll wear some big bum mascara and go with it! Smirk... sigh..... ah what we deal with!
Hi Winnie,
The tight skin came on over time, over the past year or two. I have it on my hands and arms. On my face, I started realizing when I looked around, I felt tightness around my eyes. I thought maybe it was just dryness from the Sjogrens (although I was still suspecting I had scleroderma). Then I noticed the inside of my mouth had what I would describe as membranous skin that came up.
The scleroderma was formally diagnosed with a skin biopsy (I have positive ANA, nucleolar, but never anything else), and now Im realizing I my upper lip is tight. I cant whistle anymore, cant suck chocolate that gets on my finger, cant lick my top lip easily...
And no, I havent been checked for Lyme, but I think in my case its pretty safe to say its scleroderma. The rheumatologist says crest because it was relatively slow, but I have tight skin on my chest and stomach area too, and websites indicate that could be more diffuse. Im going to ask him about it on Thursday when I have an appointment.
Ill check out the Roadback foundation. Havent heard of it. Thanks!
Sending you some seriously giant and guaranteed soft ( ( ( H U G S ) ) ) my friend.
Patze
Quote from: Joe S. on March 02, 2012, 04:12:40 AM
I am going to be a wet blanket. Don't count your AI diseases before they are hatched. You could still have polymyositis.
As my new dermatologist told me Friday, "You are just entering the spectrum" of polymyositis/dermatomyositis. She didn't diagnose me; I don't have a positive CK or other tests, only Sjögren's +ANA and +SS-Al. I do have some of the skin changes for dermatomyositis.
Since there are no skin changes for polymyositis, you would have to wait and see whether the blood tests become positive, as Joe said.
I think we have to deal, though, with the mix we have right now, not worry about the next thing down the road.
Keep us posted, and {{{hugs}}}
Soycoffee