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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

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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

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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

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  • 8 months later...
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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.

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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.

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Guest guest

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.

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  • 2 months later...

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

---------------------------------

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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! " .

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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.

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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.

>

>

>

>

>

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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.

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  • 1 month later...

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

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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

>

>

>

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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

> >

> >

> >

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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

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  • 1 year later...

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.

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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.

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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.

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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.

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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.

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