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Symptoms from Chekhers4art

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#1 chekhers4art



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Posted 29 March 2010 - 05:13 PM

Hi Shelley,

I am almost 62 years and I had silicon implants inserted in the late '70's I had and have neuro response from that and diagnosis in 1995 with MCTD. I was explanted for ruptured gell implants as well as an artificial implant in my right great toe 1995 at UC San Francisco. I have raynauds with so far only lesions on my toes but my nipples go white when cold as we as my fingers going purple and numb. My opthamologist treated me for dry eyes more than 2 years ago. Because of the pulling in my eyes I made another appointment. Last week he put me on steroid drops. I told him my eyes feel like they are pulling into the corner of my nose and I visibly see that on my right eye as well as white tissue lines in the corner of both and my nostrils seem indented and burn. Do others have those feelings? I was in the hospital in November 2009 with bleeding, diahria and mucas. I had a colonoscopy after IV antibiotics that was aweful. Report states that I had a few nodules, possibly early signs of ischemia, difficulty from most likely adhesions in my abdoman and pelvic...no cancer per biopsy but will have to go under general anastisia next time I have the proceedure. I have to take miralax + in order to have a bowl movement. I have on my chest between my breast one round sunken lesion and what looks like white stretch marks with small white dots. On my back I have a slightly darkened areas that is sunken with a light ridge around it. Possibly more areas. My dermatologist whom I saw over a month ago did a lot of documenting but no diagnosis and wants to see me in 6 mos. I don't like to assume a doctors comments but I noted my chest scars and he knows I had implants which many years ago we could not talk about so I have not gone there at all but our last visit he comments to his nurse..some people are allergic. I was to scared to ask allergic to what. My eye doctor said I most likely have Sjogrens and wants to see me in a month. I have deep thick red lines running into my lips that cause deep creases. The inside of my lower lip is thickened and has large red veins. My toung is soar and what looks like small red dots which must be taste buds. I have old xrays stating I have intertestial lung disease.

I noticed that nobody talks about silicone and I am understanding why. It's not about the silicone it's about the disease..so am I right in not talking about that? What I mostly want to know about is the pulling inward of my eyes and the indentations on my back and chest. I also have a large area on my right thy that is indented and my old rheumathologist use to inject with cortizone. She would only give me pills and would never diagnose.

Thank you for your ongoing support. I have purchased volumes 1,2 and 3 of the books as well as the wrist bands. I know my condition is not as bad as others but have also found those that have the same frustration as I do with doctors. I will mention that my last echo on my heart last month states slight thickening of the total mycardial and grade 1 of the LV. I have mitral valve prolapse with severe regurgitation. I have severe acid reflux. My primary intern thought I might have CREST but there seems to be so much more happening to me at a fast rate. Watcha Think??


#2 Shelley Ensz

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Posted 30 March 2010 - 03:46 AM

Hi Lorenn,

Welcome back to Sclero Forums! I'm sorry you have so many things going on. I know it must be very confusing, for both you and your doctors. With mixed connective tissue disease (MCTD) the symptoms can be very widespread, as you are discovering.

I think you would probably benefit a lot by consulting a scleroderma expert. They could advise as to whether or not any of your skin issues are related to scleroderma, particularly on your face. With MCTD, you can have symptoms of any of the connective tissue diseases, including scleroderma and Sjogren's, but often without developing a full-blown version of any of them.

I'm not entirely sure, but I think the current mainstream stance is that there is no increased incidence of connective tissue disease in people who have had breast implants, but of course that has varied over the years. But, really, it doesn't matter what has caused your illness, what matters is the symptoms you are dealing with today. If the doctors think you are bringing it up in hopes of them backing a lawsuit, well then of course they will shy away from discussing it. So you can say that it's an interesting part of your history but you understand that anyone can come down with connective tissue disease and that the current opinion is basically that it has nothing to do with silicone implants, and that you are there to get proper diagnosis and treatment, not to try to prevail in a lawsuit. (Of course, only say that if it is true!)

It is possible for the eyes to become so tight in scleroderma that it is impossible to close the eyes completely. That is a very rare occurrence, but it underlies the importance of seeing a scleroderma expert, to see if that is happening or whether you are experiencing some sort of normal aging process.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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#3 Amanda Thorpe

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Posted 30 March 2010 - 05:05 AM

Hello Lorenn

I'd like to say welcome as well as echo Shelley's suggestion that you see a scleroderma expert for some clarification about what's going on for you.

In the meantime please keep posting so that we can support you as best we can.

Take care. :flowers:
Amanda Thorpe
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