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Biomarker for Diffuse Scleroderma skin has been discovered!


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Away TOO Long


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#1 Nina

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Posted 04 June 2010 - 01:50 AM

Hello all ~ my name is Nina and I've been away TOO TOO long. I've had several reason why, and to be honest none of that is important now.When I was here last, I believe I had just had my stomach operation (gastrectomy) and recovering relatively well.

Now I have a "strange" new problem. It seems I have a saliva duct that has become clogged. Does anyone know anything about this?

I first noticed a knot on the side of my face, located on the joint of my jaw. When I tired to open my mouth it hurt in the joint and the knot got bigger. By the time I got to the doctor's (just my PC) the swelling had moved to the side of my face, it had also gotten very hard, like a large hard lump. My PC doctor was concerned because he didn't understand what he observed. He had another doctor look at me and because of my Scleroderma-CREST, they called an oral surgeon to see if they knew what would cause this. They came back to tell me this is something that is common in people with "Sojgrens" ,~ they gave me an antibiotic, which I started immediately. Now this morning the swelling has moved down into my neck and I have a lump under my chin, around the thyroid.

I have to admit I'm a little scared. I'm weak, I'm tired ~ I've slept the entire day yesterday and I'm forcing myself now to stay awake. Please excuse my errors in spelling, I don't know how to spell check!
I guess I just want someone to tell me they have experienced this...

#2 Jeannie McClelland

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Posted 04 June 2010 - 02:42 AM

Hi Nina,

It's nice to see you back. We've missed you!

I haven't had that problem - just swollen salivary glands that get a little ouchy from time to time, but I know several of our members have and hopefully they'll see your post and chime in.

I think I would call your doctor(s) about this since the swelling has spread and you feel so poorly. They're obviously thinking infection since they gave you antibiotics and you sure don't want to let that get out of control. Since it's Friday and mid-morning there already, I'd give them a call now if it were me.

Now spell-checking I can help you with! You might notice that as you are typing, every now and then a word will appear underlined in red? Well, the built-in spell checker thinks it is spelled wrong. Of course it thinks 'scleroderma' is spelled wrong too! Don't always take its word - just take your best guess. There is also another way to spell-check. If you highlight a word and then right click (right mouse button) on it, a drop-down menu will appear with various options available. It's fairly reliable, but it isn't a doctor either, so some of the medical words confuse it.

So that's spell-checking. Now go call the doctor!

Warm hugs,
Jeannie McClelland
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#3 Nina

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Posted 04 June 2010 - 03:21 AM

I'm calling now...
And thank you so much for tha spell check tip!
I'll be back after my call.
Nina

#4 Nina

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Posted 05 June 2010 - 01:28 PM

Sorry for the delay ~ I spent Friday and Saturday in the hospital. Once again I had at least a dozen doctors looking at me and offering opinions. Everything from the blocked salivary gland to a bad case of cellulitis of the face! Well, they decided to give the antibiotic intravenously and they also discovered my potassium was very low also; probably caused by the fluid pills I take. At any rate ~ I was in the right place! Thanks so much for urging me to call. I've been very fortunate these past two years; this was my first hospital visit since '08. They released me because I "looked so good" and I of course told them (real young, cute doctors) ~ too bad you are not telling me that under different circumstances. They appreciated my sense of humor. I'm still in quite a bit of pain and I have to return to the office on Monday; and get blood work before my visit.

I spent the time I had in the hospital educating everyone about "Scleroderma" since (emergency room included) had not heard of Sjogrens and knew very little about Scleroderma.

I'm home and I'm fine ~ just wondering about my future. Seems my symptoms are stepping it up... I'm try to post a couple of times a week. It may take me some time to get reintroduced to everyone!~
Much love to all,
Nina

#5 Jeannie McClelland

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Posted 05 June 2010 - 04:29 PM

Whew, I'm glad you called and they admitted you!

One of my friends had several bouts with cellulitis and I have to tell you that is nasty stuff to get rid of if gets a head start. The first time she had it and told me she was in hospital because of it, dumb me thought, well, yeah, we all have lumpy bumpy thighs at our age (and weight), what's the big deal? I didn't catch that she was saying cellulitis instead of cellulite.

Woohoo! Good for you, turning the experience into a teaching opportunity. I try to do the same thing when I can, I just wish Raynaud and Sjogren had been named something like Smith and Jones. :blush:

Nina, I'm so glad you're back. Let us know how you get on at the doctor's on Monday, OK?

Fondly,
Jeannie McClelland
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#6 debonair susie

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Posted 06 June 2010 - 03:32 PM

Hi Nina,

I'm also very glad to see you back! However, I'm sorry you've had a rough go of it :o

It was a stroke of luck that they were able to pin things down for you and help you during your hospital stay. That being tired can be attributedso many different things, so I'm glad they made the discoveries they did.

Please take care of yourself and I surely hope that you can feel better as each day passes.
Special Hugs,

Susie Kraft
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#7 Amanda Thorpe

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Posted 14 June 2010 - 08:02 AM

Hello Nina

Sorry I'm late in saying "Great to hear from you again!" I'm sorry you've been hospitalised but love your attitude, educating as you go. :emoticons-yes:

Take care and keep posting. :flowers:
Amanda Thorpe
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