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Thickening on face?


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#1 mona

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Posted 06 July 2009 - 05:11 AM

Hi Everyone,

I hope this message finds everyone well and enjoying the Summer. I have a quick question about skin thickening. When my journey with symptoms began a couple of years ago I noticed my nostrils were thickened. Lately, I have noticed that the area around my mouth is changing. It is difficult to describe but when I smile hard I can feel what feels like tightening and when I purse my lips you can see the thickened skin. Does anyone else have this?

I have an appointment with Jefferson Hospital in Philadelphia tomorrow with a scleroderma specialist. I am getting a little nervous but I am hoping he will be able to shed some light on what type of scleroderma I have or if he thinks it is something else or maybe even both.

The thickening on my face is worrisome and I fear it is inside my mouth. Ugh, this is a difficult condition to keep up with;)

Thanks

Maria

#2 Amanda Thorpe

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Posted 06 July 2009 - 05:28 AM

Hello Maria

I'm sorry to hear that you're having facial issues but glad you're on the cusp of seeing a sclero expert. Make sure you write all of your questions down so you remember to ask everything and if you don't think the answer you're give is sufficient challenge it. You may not hear what you want to hear (does anyone with sclero?) but at least you'll know all your questions were answered to your satisfaction.

I don't have and have never had tight or thick skin on my face and I foolishly thought this meant my face would be a sclero free zone...wrong! My mouth is smaller and my lips are thinner but nothing I can't live with, if I smile it doesn't even show! I know that people with tight skin on their face can end up looking like they've had a facelift, all perky and wrinkle free! :D

Please let us know how you get on and take care.
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#3 piperpetpete

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Posted 06 July 2009 - 05:37 AM

I'm curious, what does the thickening look and feel like? Does it hurt when you try to pinch it? After having that burning pain behind my knees and finally stopping my running and walking workouts by just sticking to swimming, the pain is almost completely gone but the inside area of both knees developed swelling. It has gone down some and I don't see any tightness but can't distinguish if it's thick or swollen.

#4 mona

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Posted 06 July 2009 - 05:46 AM

"I know that people with tight skin on their face can end up looking like they've had a facelift, all perky and wrinkle free!"LOL, now that would be a bonus wouldn't it!

Actually, I have some notes written for previous visits but I am going to get organized today for tomorrow's visit. I have copies of all of my tests, etc., for him to look at. I guess I am afraid he is going to say the same thing the other doctors are saying which is essentially that they are not sure. My last round of labs were normal for the usual suspects but my eosinophils are high. My first rheumatologist wanted to rule out eosinophilic fasciitis which I think has been ruled out due to the repeat skin biopsy showing mucinosis and morphea.

Compounding the problem with the diagnosis is that I have what was diagnosed as granuloma anulare which is covering most of the areas that the scleroderma is-hands, face, feet. Very interesting presentation if I must say so myself;)

My newest symptoms are an odd feeling in my feet. Almost like a burning or cold feeling, yet they feel normal to the touch.

Thanks for the feedback.

#5 mona

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Posted 06 July 2009 - 07:55 AM

My lips almost feel swollen. I have deep grooves when I purse my lips and I can literally feel the thickness when I do purse. I can pinch the areas without pain but the skin is thicker. I also have thick skin folds on my wrists, ankles and arms which leads me to believe this is leaning toward the systemic scleroderma. I am still confused about all the various types and presentations of this condition.

It is interesting you say you are a runner. I run as well and another development is that when I push hard during a run I get a tingly type of feeling in my hands and feet. I am guessing it is perfusion of blood but I suppose it could be the lack of perfusion now that I think about it.

Wish I knew.

#6 piperpetpete

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Posted 06 July 2009 - 11:27 AM

Hi Mona,

I would imagine the tingling could be several different things....from lack of H2O to blood supply problems....or even, the feet, shoes too tight. Do you feel dizzy when pushing?

Have you had the blood work done for positive ANA? And/or scl-70?

When I pinch the area I have on the inside of my knees, it hurts. Go figure.

#7 mona

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Posted 06 July 2009 - 01:37 PM

No, although I have gotten to the point of being a little dizzy during a hard run in the heat. I try not to push to hard and I really don't run all that fast. It is a weird sensation though and I find it curious that I only feel it in my hands and feet. I will be mentioning this to the specialist tomorrow.

Thanks for the feedback.

#8 piperpetpete

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Posted 06 July 2009 - 04:30 PM

Interesting...please let us know how it goes!

#9 mona

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Posted 07 July 2009 - 08:06 AM

Hi Everyone,

Just got home from a harried day in the city. My visit with the Dr. went well and I believe he is thinking that I do not have scleroderma but eosinophilic fasciitis (EF) instead. I have the classic cobblestone pattern to my skin which I think is called "peau d'orange". My thoughts are what was initially diagnosed as granuloma anulare last year may just be this peau d'orange presentation that accompanies EF.

He ordered some labs (that had to be done at Jeff before I left) and wants me to have another biopsy because he does not think the first two that were taken were deep enough. He would also like me to see a dermatologist affiliated with Jefferson. Not so sure that I want to travel into the city as the parking alone cost me $25 today:)

I actually have an appt with a dermatologist at Cooper tomorrow that I just may keep. The surgeon he wants me to see is also in the city and I am not sure who to schedule first at this point. I tried calling them and found a message that the appointment scheduler is off today...

The Dr. gave me a follow up appt in September and I just made an appt (after holding for 30 minutes on the phone) with the dermatologist he wants me to see a week later than that. Hmm..business must be good. I guess I should reschedule the appt with the rheumatologist until I after I see the dermatologist??

This is like a full time job sometimes.

Hope everyone has a wonderful day.