Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Hey Terri, I am glad you found our group.Its full of great people that will answer any question you have.I have PLS but the two are really similar so when they find the cure for one the other is soon to come.I got diagnosed in March 2004 but went through a couple years of people and Drs. telling me it was in my head too lol and they could find nothing wrong with me till I found Emory clinic in Atlanta and finally found an answer.It wasnt the answer I really wanted but was relieved to finally get one lol.You can ask any question you can think of in here and you will get an answer.Most of the time quite a few answers lol but someone will always answer you. Welcome to our family and GOD Bless. Your Friend sweetcuteandspoiled wrote: I wanted to take a moment and introduce myself. My name is Terri, and I just learned that I am not alone. I was diagnosed with HSP 11 years ago, and I have been searching for answers. I recently met a drug rep at the doctors office where I work who also has HSP and he has opened my eyes to the organization. Over the last 11 years, I have been to several neurologists and have come across things I have felt have helped (steroid treatments used in treating MS), but because I didn't have certain criteria (spinal tap was negative, therefore I did not have MS) they would not try the treatments again. They would pass me off like I was crazy. Anyway, I am looking forward to hearing about some other experiences, things that help, things that don't, and most importantly extra support from people who are going through the same things. I have also recently signed up for the walk here in Nashville. If any of you are going to be there, let me know. I look forward to meeting others that I can relate with. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2005 Report Share Posted December 6, 2005 Dennis, Welcome but should I say nobody should have this disease. I was diagnosed in August, 2004 and my symptons are progressing fast. I can hardly talk and fall alot. What is your symptons currently? I can't do anything with my hands including keyboarding. Thanks Rick in Ann Arbor, MI " DENNIS L. SAYLOR " wrote: My name is Dennis, I live in Ashland,OR and just found this group. I've had PLS for 2 years, and am looking forward to " talking " with y'all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2005 Report Share Posted December 6, 2005 Hi Dennis from Dennis, this is a good group and you will learn alot. I was dxed Nov.2003 and I have been reading ever since I do not post much but I read every day. Welcome to the group and you will learn more about PLS than you ever wanted to know. Welcome to the group. --- " DENNIS L. SAYLOR " wrote: > My name is Dennis, I live in Ashland,OR and just > found this group. > I've had PLS for 2 years, and am looking forward to > " talking " with y'all. > > > > __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2005 Report Share Posted December 6, 2005 Hey Dennis, Welcome to the best group you can belong to if you have PLS.I was dx in March 2004 after searching for a couple years to find out what was wrong.You can ask any question you want to and someone will answer you.Probably alot will answer.This group is great for answers and a great scource of support from all over. Your Friend Eller " DENNIS L. SAYLOR " wrote: My name is Dennis, I live in Ashland,OR and just found this group. I've had PLS for 2 years, and am looking forward to " talking " with y'all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2005 Report Share Posted December 7, 2005 Welcome Dennis! I have had PLS for 9 years, but was only diagnosed officially a year ago. This group has been wonderful! They have given me support, information and laughter. There are no dumb questions....only needless worry, if not asked. WELCOME!! Di....PLS..... Alberta,Canada > > My name is Dennis, I live in Ashland,OR and just found this group. > I've had PLS for 2 years, and am looking forward to " talking " with y'all. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hi Everyone' My name is Jan i'm from Melbourne Australia and i suffer from lichen sclerosis, at the moment i am suffering with a bad case of it. I'm using a persciption cream called dipprosone, i feel soo uncomfortable and its a nightmare when its time to pass urine, does anyone have any recommendations to stop the burning and the stinging, the pain is unbearable. I applied some aloe vera gel that has helped with the dryness. I'm sure this time around its flaired up soo bad because i have been stressed. This is the worsed case of it that i've had in 3 years, any ideas or info would be much appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hi Jan. I am very sorry to hear that you are in so much discomfort. Have you joined the LS group? If not, I can give you the web address. Everyone on that group who all suffer from LS or LP (lichen planus). I have LP and I am going through a flare right now. I try to stay away from the over-the-counter medications like aloe vera gel because of the additives, which make me worse. Emu oil is very soothing. You can order it online. A lot of us get it from Laid in Montana. I find that if I do not use it my skin will stick together and that is unbearably painful for me. I have even used olive oil or some use coconut oil (which I have not tried yet). Warm baths are very helpful for me. Make sure you take a bath prior to applying the steroid cream. For me, I have to have all my meds compounded specifically with no additives because I am extremely sensitive. Also, an allergy medication (over the counter or prescription) helps with the itching. I take Allergra for that and also Benadryl prior to going to bed. The itching can drive you crazy and cause you to have poor sleep, which makes your LP/LS worse. I hope you feel better soon. Mindy>> Hi Everyone'> My name is Jan i'm from Melbourne Australia and i suffer from lichen > sclerosis, at the moment i am suffering with a bad case of it. I'm > using a persciption cream called dipprosone, i feel soo uncomfortable > and its a nightmare when its time to pass urine, does anyone have any > recommendations to stop the burning and the stinging, the pain is > unbearable. I applied some aloe vera gel that has helped with the > dryness. I'm sure this time around its flaired up soo bad because i > have been stressed. This is the worsed case of it that i've had in 3 > years, any ideas or info would be much appreciated.> Quote Link to comment Share on other sites More sharing options...
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