Scleroderma Information » Scleroderma » Numbness
Question:
Mario: I’ve always felt there was much hope for those of us with diffuses SD. I’ve had it for over ten years. I’ve been very ill with it, and my lungs at one time were deteriorating so rapidly that the doctors gave me little chance. I’m doing fine now, in fact the disease is regressing. My skin is softening and I find I do more with my arms than I could even a month ago. This is not unusual. Diffuse SD is known to plateau and improve after the first few years. Many people with diffuse SD feel better and can do more 5 years into the disease than they could during the onset of the disease. Of course it is a terrible disease, my hands have been crippled by it, my face is disfigured and I can no longer work. And we know, some are not as "lucky" as I am. But many of us do improve with time, and there is MUCH hope that this will happen for you. I’m also excited by what I’ve been hearing about research and new treatments. I fully expect to be cured some day. I know the future can look bleak for us, mine looked that way too, once. Please don’t let SD take your hope away. Kate – Hide quoted text — Show quoted text -Mario Karic wrote: > Kathy: > I have the same problem and I also have diffuse SD for about 4 years. > I was under D-Pencillamine and It helps a little . > Unfortunately with SD you must hope that things will not go worse > because they never come better . > We must live with this because from my experience diffuse SD is a number > one killer ,you never know what organ will be damage , > Sorry I’m not giving much hope . > Mario
Response:
I’ve been reading this Newsgroup for quite awhile and thank you all for the good information! My friend, Ruth, and I have diffuse SD, both diagnosed in the past 1 1/2 years. We share some of the same symptoms, but she unfortunately has been suffering numbness in half of her face, including mouth and teeth. She has seen a neurologist who claims it is caused by the SD. They are trying different doses of a medication, but nothing has helped so far. Has anyone had experience with facial numbness who might shed some light? Thanks, Kathy Wilkie
Response:
Sorry I pushed the wrong button and posted before I had a chance to finish. The facial numbness you describe might be trigeminal neuropathy. The trigeminal nerve is a nerve in your face that has three branches. If one or more of these branches is affected, it can casue pain, numbness or paralysis to part of your face, including the mouth area and cheek. Neuropathy just means a disease of the nerve. Sensory neuropathy means that senasation is affected – this could be pain, tingling, numbness or a combination. Motor neuropathy means a nerve’s ability to casue movement is affected – ie paralysis. In SD, trigeminal SENSORY neuropathy is not uncommon. According to Drs Ariane Herrick and Malcom Jayson, writing in the book "Systemic Sclerosis" (Clements and Furst) cite a study in which 4% of 442 people with systemic sclerosis were found to have trigeminal neuropathy. I have not been able to find anything about treatment, whether anyhing works for this. Perhaps others with this problem could tell us what they have experienced and what treatments, if any, have helped. Kate Nance I HAVE SCLERODERMA http://www.epix/~knance/ – Hide quoted text — Show quoted text -Kathy Wilkie wrote: > I’ve been reading this Newsgroup for quite a while and thank you all > for the good information. > My friend, Ruth, and I have diffuse SD, both diagnosed in the last 1 > 1/2 years. We share some of the same symptoms, but she unfortunately, > also has numbness in half her face, including mouth and teeth. > Her neurologist claims this is caused by SD. They have been trying > increasing doses of a medication, but it has yet to help. > Does anyone have experience with facial numbness? Any remedies? > Thanks, > Kathy Wilkie
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