More information since I am new to this board!
Posted 27 December 2009 - 09:05 AM
I went to doctors for at least 2 years before being diagnosed with the CREST form of scleroderma and fibromyalgia. That was about 20 years ago. I have been very blessed that the scleroderma has progressed slowly. About 3 years ago I had bilateral knee replacement (fun---Not!). The doctor told me there was a 1% chance of nerve damage during surgery. Guess what?! I was the 1%. I have a misfired nerve in the right foot leg which is called reflex sympathetic dystrophy or RSD. My big toe now sits on top of the toe beside it. I have a hard time finding shoes that have a wide toe box. My esophagus has been dilated twice so far. My lungs have only minor damage. As I stated in another post the biggest problem I am having now is diarrhea. Hoping to get that straigtened out soon. Oh, almost forgot, I also have restless legs really bad. Another thing I am having a problem with is sores on my nose and ear lobes. I do not know what is causing them but wondered if anyone else has ever had this problem. They start out as painful hard spots. Then they puff up and are filled with what looks like water. I end up busting them because of the pain and then they turn into ugly scars Help!!
Posted 27 December 2009 - 10:35 AM
20 years with sclero is testament to your resilience and determination! Sorry about being in the 1% that's an even lower percentage (I think) than that of having sclero!
Now I am going to hazard a guess as to what the lumps are on your nose and ears, could they be calcinosis? If you have a look at our page on calcinosis you'll see that it's mostly associated with CREST (it's what the C stands for) and can occur almost anywhere on the body. Do bear in mind though that I am a non medical layperson and you really need to get a definitive answer from your doctor(s).
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Posted 27 December 2009 - 11:22 AM
Thanks for replying to my post about incontinence, I was just getting organised to answer that one when I saw your latest post about your blisters. I too had CREST for many years before anybody identified it - from 1966 until 2003!!!! I think I have been lucky that I have had no skin involvement apart from sclerodactyly and my organ involvement seems to have been slow compared with what others have experienced. However, now things seem to be hotting up and I am pleased to have you folks to talk to.
For me calcinosis consisted of very painful little blisters on the joints of my fingers. I would pop them and they would ooze milky fluid, the pain would go and then they would dry up.
Sounds like your blisters could be the same thing and I think that they are way better than gravel under your skin!!!! Which I have experienced once only. I don't know whether the blisters on my fingers would have grown bigger - I never gave them a chance to grow.
But, the best part has been that they eventually stopped and I have not had any for probably 15 years now.
Posted 27 December 2009 - 09:44 PM
Posted 28 December 2009 - 10:37 AM
I've not had the opportunity to welcome you to the forum...until now! So glad you are posting as you are!
I'm also relieved to see that you are headed in the right direction...getting to a dermatologist.
Should this be calcinosis, treatment is so important.
However, whatever the case, I wish you a good outcome!
Take care and please...let us know what is going on, if you would?
Posted 28 December 2009 - 11:18 AM
Posted 28 December 2009 - 12:26 PM
I too have CREST. I am not a doctor so you could ask your doctor about this. I had restless legs for about a month. It turns out that I was anemic. Restless legs can be a sign of low iron. I have watermelon stomach which causes me to bleed internally. Restless legs are now my cue along with black stools to know if I am bleeding. Again I am not a doctor ,but it sounds like calcinosis is what you are dealing with. Hang in there and you can private message or email me with any other questions.
Posted 29 December 2009 - 12:02 AM