My name is Sharon and I live in Australia. I have just hooked up to the internet in the hope that maybe there is someone out there that has tried something that may help! I have linear scleroderma. I have had it since I was 16. I am now 43.
At first the scleroderma started in the centre of my head about the size of a sizpence (maybe 1/2 " diam). The skin specialists measured and treated it with creams to no avail. I went to a doctor in Israel that at the time specialised in skin conditions. This also led nowhere. I was told at the time that the condition usually occurs in pre-pubescent kids and usually fixes itself before puberty. Well, 16 is definitely post puberty.
I saw the same skin specialist for years, not knowing why it appears, why it goes, whether it is hereditary. I have seen a rheumatologist in the last 2 years, and with all the creams nothing works. It has spread in the meantime down my nose, a little in the corner of my eye, and is now at the base of my nose. I have been told by the rheumatologist that when it is not a red colour it is dormant. For years I have put up with a pulling of muscles on the right side of my face. My husband could never know whether I was sneering or my muscles were making the great facial expression!
Well, I have fluid retention problems, thyroid problems, go to the toilet frequently, have a large weight gain, a tingling in the finger tips(could be carpal tunnel- I am a graphic designer and work with my hands a lot doing repetitive stuff). Apart from the hair loss, that means my part moves over from time to time, I cope reasonably well. My biggest problem is that of weight gain and fluid retention. My kids without realising call me big, and wonder why I can't do stuff with them. This hurts the most.
I don't know if there are any other people with this type of linear scleroderma, and I feel quite isolated. I have been told that I have a rare version of a rare disorder. In the last 4 weeks, I have gone to a Chinese Herbalist world-famous for some of his cures. He believes that my thyroid which has been according to blood tests "just below normal levels" and therefore not severe enough to treat is a problem that he had 'fixed'. He says that my back has been out and blood vessels have been 'blocked' thereby not allowing blood to flow to the thyroid. He fixed my back, and believes that the thyroid is fixed now.
I am on a herbal treatment for my kidney which he says is also weak. Has anyone thought of herbal treatment? I have felt so alone with this condition, and it appears that the only treatment known in Melbourne, Australia is Dr Medsger - University of Pittsburgh. He suggests a treatment of D-penicillamine. Great for me! I am allergic to penicillin, and its derivatives. I was told I would have a large weight gain, allergic reactions to the penicillin that would eventually go away, and a 12 month treatment BEFORE any result could be measured. WOW, no way was what I said.
I am a self-employed graphic designer, and 3-months of allergic reactions all over the body was not going to be good for business. This is where I am today. I really hope that Professor Wong can help. He believes that he has fixed the blood flow and everything will now be wonderful for me. He said "what was in the past, is in the past, this is the present the probelms are fixed and the future is going to be wonderful". I hope so, sorry, I am sure that it is.
Update 12/13/98
I am still trying to fix if not the disorder at least the side effects that most of the doctors have not bothered to treat. I saw my GP last week, and after heaps of prodding, he thinks I might have a gall stone, and possible enlarged kidney. And here the herbalist was treating me for a "weak" kidney. I hope the herbal treatment did not cause anything. I have been extremely bloated for years, and now, maybe, it might be gall stones that is causing at least this side effect and not the linear scleroderma.
Back to Morphea/linear page.