Guest guest Report post Posted October 5, 2005 Terri, Welcome to our group, I don't have HSP but I do have PLS. Our disease our similar but still somewhat different. Does anyone in your family have HSP ? HSP is hereditary but can just start in ones family. Because our diseases are so rare a lot of doctors don't know much about us and some do think its in our HEAD!!........There are neurologist that do understand don't give up just keep looking. You are in for quit a treat going to the Team Walk in Nashville. There is nothing like meeting others with our problem. We are so much smarter then most doctors. I've have been to many meetings and found so many friends and have learned so much. Luckily I found the web site Sp-Foundation when it started and it made things a lot easier to deal with. Please feel free to ask questions that's what we are here for...........Flora/Florida Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 5, 2005 Terri, Welcome to our group, I don't have HSP but I do have PLS. Our disease our similar but still somewhat different. Does anyone in your family have HSP ? HSP is hereditary but can just start in ones family. Because our diseases are so rare a lot of doctors don't know much about us and some do think its in our HEAD!!........There are neurologist that do understand don't give up just keep looking. You are in for quit a treat going to the Team Walk in Nashville. There is nothing like meeting others with our problem. We are so much smarter then most doctors. I've have been to many meetings and found so many friends and have learned so much. Luckily I found the web site Sp-Foundation when it started and it made things a lot easier to deal with. Please feel free to ask questions that's what we are here for...........Flora/Florida Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 5, 2005 Welcome, Terri, to a wonderful group of people. You'll probably find more answers to your questions here than you have in the last 11 years. But, most important, you'll get caring, concern, support, & friendship. That's what has helped me the most over the last 6 years, since I was diagnosed. Hope you find the same here. Blessings, Laurel from Iowa Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 1, 2006 Hello ...I must have missed your original post, or else Yahpoo didn't send it...................what meds are you on , and what are your latest labs for Free T3 and Free T4 esoecially.........and TSH?? I would say your depression/panic etc are from being mismanaged by your doc, not enough or the wrong meds..why did you have your thyroid out? Not just because of the goitre and nodules I hope, that could have been managed with the correct treatment Welcome to the group!!! Meleese in Oz xxx PS congrats on your marriage!!!! - ------Original Message------- From: Cross Welcome to the group. I hope you will like it here. How are you doing and how is the weather there? your friend, indigobunting83 wrote: Hello everyone. My name is and I am a new member to the group. I was diagnosed with a goiter and thyroid nodules at the end of last year and had my Thyroid removed at the end of January 2006. I am now supposedly at a stable hormone level but still having symptoms. They say I am depressed and have panic/anxiety issues. I am hoping to learn more from this group.Your friend,Me and got married on June 17 of this year. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 1, 2006 Hello ...I must have missed your original post, or else Yahpoo didn't send it...................what meds are you on , and what are your latest labs for Free T3 and Free T4 esoecially.........and TSH?? I would say your depression/panic etc are from being mismanaged by your doc, not enough or the wrong meds..why did you have your thyroid out? Not just because of the goitre and nodules I hope, that could have been managed with the correct treatment Welcome to the group!!! Meleese in Oz xxx PS congrats on your marriage!!!! - ------Original Message------- From: Cross Welcome to the group. I hope you will like it here. How are you doing and how is the weather there? your friend, indigobunting83 wrote: Hello everyone. My name is and I am a new member to the group. I was diagnosed with a goiter and thyroid nodules at the end of last year and had my Thyroid removed at the end of January 2006. I am now supposedly at a stable hormone level but still having symptoms. They say I am depressed and have panic/anxiety issues. I am hoping to learn more from this group.Your friend,Me and got married on June 17 of this year. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 1, 2006 Hello ...I must have missed your original post, or else Yahpoo didn't send it...................what meds are you on , and what are your latest labs for Free T3 and Free T4 esoecially.........and TSH?? I would say your depression/panic etc are from being mismanaged by your doc, not enough or the wrong meds..why did you have your thyroid out? Not just because of the goitre and nodules I hope, that could have been managed with the correct treatment Welcome to the group!!! Meleese in Oz xxx PS congrats on your marriage!!!! - ------Original Message------- From: Cross Welcome to the group. I hope you will like it here. How are you doing and how is the weather there? your friend, indigobunting83 wrote: Hello everyone. My name is and I am a new member to the group. I was diagnosed with a goiter and thyroid nodules at the end of last year and had my Thyroid removed at the end of January 2006. I am now supposedly at a stable hormone level but still having symptoms. They say I am depressed and have panic/anxiety issues. I am hoping to learn more from this group.Your friend,Me and got married on June 17 of this year. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 26, 2006 Hi Eva, I will keep you in my prayers. Please let us know as soon as you hear anything. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html BreastCancerStories.com http://www.breastcancerstories.com/content/view/433/161/ Angel Feather Loomer www.angelfeatherloomer.blogspot.com Check out my other ornaments at www.geocities.com/chucky5741/bcornament.html Lots of info and gifts at: www.cancerclub.com Hi Hi to all I know I do not post alot.And I hope every one is doing fine. I had to have an ultrasound done on my right breast yesterday now this is the one that had the cancer in and had lastisimus dorsi flap and had a silicone gel implant.It is causing me alot of pain.My surgen said he did not feel any swolen nodes but decided to do the ultasound done.Should get the results in a few days.I hope it is not any thing bad and that it is just scar tissue that is hurting. Thanks for listening Eva God Bless You All --------------------------------- How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2006 My diagnosis was May of 2004 and chemo and radiation ended in Jan of 2005 - the aches and pains and nerve annoyances stayed for quite some time - now Sept. 2006 soooo much better - when I use my right hand a lot - like on the computer all day it does hurt and is a little bumb and I do get shooting pains in my breasts and under my right arm but it's ok - when it is annoying I just say to myself, " it isn't chemo!, so I can handle it! " . Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 3, 2006 Hi Sheri and welcome. I was ER neg so couldn't take Tamoxifen but lots of the ladies here are on it or have been on it. I am sure they will get back with you. I will keep you in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html BreastCancerStories.com http://www.breastcancerstories.com/content/view/433/161/ Angel Feather Loomer www.angelfeatherloomer.blogspot.com Check out my other ornaments at www.geocities.com/chucky5741/bcornament.html Lots of info and gifts at: www.cancerclub.com Hi Hi,I am new to this group and hope I am doing this right because I have never been in a group before and am a little computer illiterate. I was diagnosed with breast cancer 3 days before christmas in 2004. I am a single mom and my biggest fear was that it would be my last christmas with my son. I went through a lumpectomy,chemo,and radiation. I finished up about a year ago ,and have been back to work for a year. I joined a gym and am still trying to take off the weight that i gained. I have been on tamoxifen for the past year. I still get sores on my arms and my feet have nerve damage - wondering if anyone else has this and how to make it better. I hope to walk the 5k in may for breast cancer . Oh yeah - I am 41 yo and my name is sheri. ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.407 / Virus Database: 268.12.12/461 - Release Date: 10/2/2006 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 4, 2006 Hi Sheri and Welcome! - Jen : ) On Tue, 03 Oct 2006 22:38:09 -0000 " sherir5 " writes: > Hi,I am new to this group and hope I am doing this right because I > have never been in a group before and am a little computer > illiterate. > I was diagnosed with breast cancer 3 days before christmas in 2004. > I > am a single mom and my biggest fear was that it would be my last > christmas with my son. I went through a lumpectomy,chemo,and > radiation. I finished up about a year ago ,and have been back to > work > for a year. I joined a gym and am still trying to take off the > weight > that i gained. I have been on tamoxifen for the past year. I still > get > sores on my arms and my feet have nerve damage - wondering if anyone > > else has this and how to make it better. I hope to walk the 5k in > may > for breast cancer . Oh yeah - I am 41 yo and my name is sheri. > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 4, 2006 Sharrell, I was diagnosed back in May 1990 with Stage II. I believe it was 2. Back then they didn't do the her2 test. I had a mastectomy, one bad lymph node, 6 mo of chemo, no radiation or reconsturction. So far I am doing fine. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html BreastCancerStories.com http://www.breastcancerstories.com/content/view/433/161/ Angel Feather Loomer www.angelfeatherloomer.blogspot.com Check out my other ornaments at www.geocities.com/chucky5741/bcornament.html Lots of info and gifts at: www.cancerclub.com hi HI, Is there anyone out there who has had or has breast cancer, stage 1-2, grade 3, her2+. I so need to know how your doing and how the out come has been. SHARRELL, --------------------------------- Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 6, 2006 Hi guys, My doctor felt a lump in my lower armpit on Friday, and so I joined this group because I know nothing about this sort of thing. I appreciated hearing what you guys said to Marcy about 8 out of 10 lumps being benign. Thanks for reading, Leah Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 6, 2006 Dear Leah Just wanted to celebrate your entrance into this group. I am sure that your problem will amount to nothing( although it is big to you right now). There are so many medical people who will work with you and you have come to the right place to educate yourself to know all the things that are going to be thrown at you. Your name intrigued me as it is the name of my neice and even though I know you aren't her, I just had to answer you ne > > Hi guys, > > My doctor felt a lump in my lower armpit on Friday, and so I joined this > group because I know nothing about this sort of thing. > > I appreciated hearing what you guys said to Marcy about 8 out of 10 lumps > being benign. > > Thanks for reading, > > Leah > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 6, 2006 ne, Thank you so much for responding to me. I didn't really think anyone would. I really appreciate you for doing so! I'm 32, married w/ 2 kids. I go for a mammo and ultrasound on the 14th. Thanks again, Leah > > > Dear Leah > Just wanted to celebrate your entrance into this group. I am sure > that your problem will amount to nothing( although it is big to you > right now). There are so many medical people who will work with you > and you have come to the right place to educate yourself to know all > the things that are going to be thrown at you. Your name intrigued me > as it is the name of my neice and even though I know you aren't her, > I just had to answer you > ne > > > > Hi guys, > > > > My doctor felt a lump in my lower armpit on Friday, and so I joined > this > > group because I know nothing about this sort of thing. > > > > I appreciated hearing what you guys said to Marcy about 8 out of 10 > lumps > > being benign. > > > > Thanks for reading, > > > > Leah > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 6, 2006 Welcome Leah, Waiting is the hardest part. Whats the next step? Is he going to biopsy it? If so when? Please keep us posted. I will keep you in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html BreastCancerStories.com http://www.breastcancerstories.com/content/view/433/161/ Angel Feather Loomer www.angelfeatherloomer.blogspot.com Check out my other ornaments at www.geocities.com/chucky5741/bcornament.html Lots of info and gifts at: www.cancerclub.com hi Hi guys, My doctor felt a lump in my lower armpit on Friday, and so I joined this group because I know nothing about this sort of thing. I appreciated hearing what you guys said to Marcy about 8 out of 10 lumps being benign. Thanks for reading, Leah Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 5, 2008 Hi mindy, its been awhile since i checked my mail .. thankyou so much for your advice.. i do have emu oil here i ordered it online.. After spending so much money on medication and a few trips to 2 different doctors one of which is my family doctor ... the first doctor had no idea what licen was.. not many ppl do... he gave me a numbing cream which did not work .... so i went to my doctor .. he said it was thrush after trying medication for that.. it didnt do much either .. so went back 2 days later he took a sample and fount it was a bacterial infection.. i knew licen wasnt that painful.. so i'm better now .. but after taking 2 lots of penicillian my teeth a very chalky .. they help some things but a very leathal to other parts of your body .. next time i'm going to a naturpath... thanks again for your advice and wishes. Jan Re: HI 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.> Get the name you always wanted with the new y7mail email address. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 5, 2008 Hi mindy, its been awhile since i checked my mail .. thankyou so much for your advice.. i do have emu oil here i ordered it online.. After spending so much money on medication and a few trips to 2 different doctors one of which is my family doctor ... the first doctor had no idea what licen was.. not many ppl do... he gave me a numbing cream which did not work .... so i went to my doctor .. he said it was thrush after trying medication for that.. it didnt do much either .. so went back 2 days later he took a sample and fount it was a bacterial infection.. i knew licen wasnt that painful.. so i'm better now .. but after taking 2 lots of penicillian my teeth a very chalky .. they help some things but a very leathal to other parts of your body .. next time i'm going to a naturpath... thanks again for your advice and wishes. Jan Re: HI 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.> Get the name you always wanted with the new y7mail email address. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 5, 2008 hi k Yes i have diprosone cream its helped... but i do think the more we stress the worse it gets .. very hard to keep stress under control at times .. i find it gets worse .. and me i'm the biggest stress head out. i've been thinking about doing some sort of yoga to depleat stress and learn to control it what do you think ? Jan Re: HI >> 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 careK. Get the name you always wanted with the new y7mail email address. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 5, 2008 hi k Yes i have diprosone cream its helped... but i do think the more we stress the worse it gets .. very hard to keep stress under control at times .. i find it gets worse .. and me i'm the biggest stress head out. i've been thinking about doing some sort of yoga to depleat stress and learn to control it what do you think ? Jan Re: HI >> 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 careK. Get the name you always wanted with the new y7mail email address. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 5, 2008 hi k Yes i have diprosone cream its helped... but i do think the more we stress the worse it gets .. very hard to keep stress under control at times .. i find it gets worse .. and me i'm the biggest stress head out. i've been thinking about doing some sort of yoga to depleat stress and learn to control it what do you think ? Jan Re: HI >> 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 careK. Get the name you always wanted with the new y7mail email address. Quote Share this post Link to post Share on other sites
