Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Hang in there will be a whole lot of fun headed your way with all the tests you will be taking. Hi Hi- I have been lurking for a while...but I haven't posted anything because no one knows what I have. My name is I am 33. 4 years ago I started having problems with my legs...it has progressed to being so spastic that I am in a chair now because walking has become unsafe. I also notice that I stutter more than ever...and I have problems swallowing at times. Every test and every doctor has said the same thing...there is nothing wrong with you. But I know there is something wrong...because I would not choose to live like this if I had the choice. About a month ago I went to a new doctor and after listening to my symptoms...he said I could have PLS...and it seemed pretty probable that I do indeed have it. He is sending me to a neuro that specializes in it to see. I do not know...after all of my tests being negative before...I do not want to go through more tests. I am afraid that I will hear what I have always heard...there is nothing wrong...go and get counseling. In any case...after doing my own research...and reading your posts...it seems like I do fit in here... In any case...I just wanted to say hi. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Hang in there will be a whole lot of fun headed your way with all the tests you will be taking. Hi Hi- I have been lurking for a while...but I haven't posted anything because no one knows what I have. My name is I am 33. 4 years ago I started having problems with my legs...it has progressed to being so spastic that I am in a chair now because walking has become unsafe. I also notice that I stutter more than ever...and I have problems swallowing at times. Every test and every doctor has said the same thing...there is nothing wrong with you. But I know there is something wrong...because I would not choose to live like this if I had the choice. About a month ago I went to a new doctor and after listening to my symptoms...he said I could have PLS...and it seemed pretty probable that I do indeed have it. He is sending me to a neuro that specializes in it to see. I do not know...after all of my tests being negative before...I do not want to go through more tests. I am afraid that I will hear what I have always heard...there is nothing wrong...go and get counseling. In any case...after doing my own research...and reading your posts...it seems like I do fit in here... In any case...I just wanted to say hi. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Hang in there will be a whole lot of fun headed your way with all the tests you will be taking. Hi Hi- I have been lurking for a while...but I haven't posted anything because no one knows what I have. My name is I am 33. 4 years ago I started having problems with my legs...it has progressed to being so spastic that I am in a chair now because walking has become unsafe. I also notice that I stutter more than ever...and I have problems swallowing at times. Every test and every doctor has said the same thing...there is nothing wrong with you. But I know there is something wrong...because I would not choose to live like this if I had the choice. About a month ago I went to a new doctor and after listening to my symptoms...he said I could have PLS...and it seemed pretty probable that I do indeed have it. He is sending me to a neuro that specializes in it to see. I do not know...after all of my tests being negative before...I do not want to go through more tests. I am afraid that I will hear what I have always heard...there is nothing wrong...go and get counseling. In any case...after doing my own research...and reading your posts...it seems like I do fit in here... In any case...I just wanted to say hi. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 , Welcome to the group.I know if your like I was then a PLS diagnoses is better than not knowing.I went doctors in NC and they told me there was nothing wrong.When I moved to GA I went the right doctor and he sent me to a specialist in Atlanta.I was just glad to know somebody knew what it was. Your Friend; tiggermania_2000 wrote: Hi- I have been lurking for a while...but I haven't posted anything because no one knows what I have. My name is I am 33. 4 years ago I started having problems with my legs...it has progressed to being so spastic that I am in a chair now because walking has become unsafe. I also notice that I stutter more than ever...and I have problems swallowing at times. Every test and every doctor has said the same thing...there is nothing wrong with you. But I know there is something wrong...because I would not choose to live like this if I had the choice. About a month ago I went to a new doctor and after listening to my symptoms...he said I could have PLS...and it seemed pretty probable that I do indeed have it. He is sending me to a neuro that specializes in it to see. I do not know...after all of my tests being negative before...I do not want to go through more tests. I am afraid that I will hear what I have always heard...there is nothing wrong...go and get counseling. In any case...after doing my own research...and reading your posts...it seems like I do fit in here... In any case...I just wanted to say hi. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 , Welcome to the group.I know if your like I was then a PLS diagnoses is better than not knowing.I went doctors in NC and they told me there was nothing wrong.When I moved to GA I went the right doctor and he sent me to a specialist in Atlanta.I was just glad to know somebody knew what it was. Your Friend; tiggermania_2000 wrote: Hi- I have been lurking for a while...but I haven't posted anything because no one knows what I have. My name is I am 33. 4 years ago I started having problems with my legs...it has progressed to being so spastic that I am in a chair now because walking has become unsafe. I also notice that I stutter more than ever...and I have problems swallowing at times. Every test and every doctor has said the same thing...there is nothing wrong with you. But I know there is something wrong...because I would not choose to live like this if I had the choice. About a month ago I went to a new doctor and after listening to my symptoms...he said I could have PLS...and it seemed pretty probable that I do indeed have it. He is sending me to a neuro that specializes in it to see. I do not know...after all of my tests being negative before...I do not want to go through more tests. I am afraid that I will hear what I have always heard...there is nothing wrong...go and get counseling. In any case...after doing my own research...and reading your posts...it seems like I do fit in here... In any case...I just wanted to say hi. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 , Welcome to the group.I know if your like I was then a PLS diagnoses is better than not knowing.I went doctors in NC and they told me there was nothing wrong.When I moved to GA I went the right doctor and he sent me to a specialist in Atlanta.I was just glad to know somebody knew what it was. Your Friend; tiggermania_2000 wrote: Hi- I have been lurking for a while...but I haven't posted anything because no one knows what I have. My name is I am 33. 4 years ago I started having problems with my legs...it has progressed to being so spastic that I am in a chair now because walking has become unsafe. I also notice that I stutter more than ever...and I have problems swallowing at times. Every test and every doctor has said the same thing...there is nothing wrong with you. But I know there is something wrong...because I would not choose to live like this if I had the choice. About a month ago I went to a new doctor and after listening to my symptoms...he said I could have PLS...and it seemed pretty probable that I do indeed have it. He is sending me to a neuro that specializes in it to see. I do not know...after all of my tests being negative before...I do not want to go through more tests. I am afraid that I will hear what I have always heard...there is nothing wrong...go and get counseling. In any case...after doing my own research...and reading your posts...it seems like I do fit in here... In any case...I just wanted to say hi. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Hi Jan, I have LS and LP. The two things that cleared up my LS were a combination of two topical meds. Triamcinilone Ointment (not sure about the spelling), I apply it twice a day ... relieves the burning and itching. Second, I use a compound of estriodal / lidocaine at bedtime, it restored my tissue to a nice healthy pink color. I also use vagifem once a week ... I do not have ovaries. I think the lack of estrogen was the cause of all my problems. in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 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. > Dear Jan, Im Kate from Perth, Australia. I suffer from vulvodynia and have used diprosone cream in the past to help relieve pain, I thought I would reply to u as diprosone cream hasnt been mentioned on this site. Im not sure if its available in the US or if anyone has had big success using it. Personally it didnt really do alot for me except that it numbed my soreness in the pelvic area so i pretty much didnt have alot of praise for it. Have you been prescribed anything else to help with your Lichen sclerosis, I take Endep 25mg at nite this has helped a little in reducing pain. Anyhow I hope to hear back from you soon. Take care K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 I've recently been dx'd with IPF and know almost nothing about it. Have had 2 PFT's done and am waiting to do a 3rd. Haven't received much info from my doc as he is waiting to see how things improve with my quitting smoking...quit 1/1/08! He wants to put off doing a biopsy as I also have multiple sclerosis and diabetes. But in the meantime I feel hung up with no info and lost in space. Would love to have friends who will help me find myself again and who I can help in anyway. Looking forward to meeting some. noreen Quote Link to comment Share on other sites More sharing options...
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