Hi a and others,
I'm 21 male recently diagnosed with Steatocystoma multiplex, with most on forearms. 'a', I'm also considering seeing Dr. Anderson and would like to get hear more about how effective the laser treatment is. How soon do you see results and is there noticeable scarring?
Regarding your question, I do believe this disease is linked to hormones, and myself would like to find ways to prevent physical manifestation. Over last year, I ate a lot of soy/meat/dairy and am now trying to avoid those hormone-altering foods and instead focus my diet on more water/veggies/omega-3 foods.
Hope that we can all keep momentum going and share more potential treatment options together!
Perroloco and others, we are eager to hear more information on flourouracil and China treaments as well!
I'm 21 male recently diagnosed with Steatocystoma multiplex, with most on forearms. 'a', I'm also considering seeing Dr. Anderson and would like to get hear more about how effective the laser treatment is. How soon do you see results and is there noticeable scarring?
Regarding your question, I do believe this disease is linked to hormones, and myself would like to find ways to prevent physical manifestation. Over last year, I ate a lot of soy/meat/dairy and am now trying to avoid those hormone-altering foods and instead focus my diet on more water/veggies/omega-3 foods.
Hope that we can all keep momentum going and share more potential treatment options together!
Perroloco and others, we are eager to hear more information on flourouracil and China treaments as well!
hi nerfer, as you mentioned earlier cure for sm, do you really think this will really help us? has anyone had experience with it? what chances that it will never grow back again? as far as i know that the doctors said that there's no permanent cure for it. as you mentioned that you're going to China for treatment so good luck & let us know how it went and please share any thought and advice with us.. thanks
Guys! Sorry for the delay... I did went to china (you won't believe how far Harbin actually is) and how f*****g cold it gets!
To make the story short, the treatment didn't work at all......
I have the procedure if anyone wants to try it (it's actually on their website). 5fl can be easily found (by a doctor of course) and it's just mixed with lidocaine and inyected in the cysts....
bshd13 wrote:
*** private info removed *** is that you i'v just got emailed from this name?
perroloco wrote:
Guys! Sorry for the delay... I did went to china (you won't believe how far Harbin actually is) and how f*****g cold it gets!
To make the story short, the treatment didn't work at all......I have the procedure if anyone wants to try it (it's actually on their website). 5fl can be easily found (by a doctor of course) and it's just mixed with lidocaine and inyected in the cysts....
hi i emailed u before can u please give me you facebook id that way we can discuss about this please
*** private info removed *** is that you i'v just got emailed from this name?
Dear Perroloco,
That is quite a sad news for everyone in this forum. But, I have this kind of admiration on your effort to find and try the cure even though it has to be as far as China. Your determination is just so classy. Now you are listed as one of my idol! :-)
Just keep this forum alive. We should try post any new information or some experience regarding this f*****g SM.
That is quite a sad news for everyone in this forum. But, I have this kind of admiration on your effort to find and try the cure even though it has to be as far as China. Your determination is just so classy. Now you are listed as one of my idol! :-)
Just keep this forum alive. We should try post any new information or some experience regarding this f*****g SM.
Hi Perroloco and others,
Thank you for updating the community about your 5fl treatment and your continued resilience to find a cure. I'm sad to hear it was ineffective, but am hopeful that as a community, we can find a way to manage this wretched condition.
I have 2 questions that I'd be grateful if anyone could take time to reply:
1. What is the rate that SM cysts grow for you: how many new cysts grow within a month and how quickly do they grow in size or become inflammed? Is there anything I can do to suppress the spreading and growth that has worked for you (such as high doses of omega-3, or diet restrictions?)
SM condition has worsened in 1-2 months since diagnosis, with new small cysts quickly emerging in abdomen, chest, lower back, upper arms and with existing cysts on my forearms becoming more noticeable! Currently I only maybe 40-60 cysts with several inflammed, though I fear the day when they become disfiguring and consume my body..
2. Have any of you had experience with simple Fine Needle Aspiration? I've read that it's benefits are only temporary because it only extracts some of contents without removing cell wall (which are bound to refill). However, I'd like to give it a try but want to get a sense of what's potential scarring/hyperpigmentation and recurrence rate.
Thanks in advance for anybody that's can help and have been in my shoes before! I hope we can all work together to find ways to manage or cure SM!
Thank you for updating the community about your 5fl treatment and your continued resilience to find a cure. I'm sad to hear it was ineffective, but am hopeful that as a community, we can find a way to manage this wretched condition.
I have 2 questions that I'd be grateful if anyone could take time to reply:
1. What is the rate that SM cysts grow for you: how many new cysts grow within a month and how quickly do they grow in size or become inflammed? Is there anything I can do to suppress the spreading and growth that has worked for you (such as high doses of omega-3, or diet restrictions?)
SM condition has worsened in 1-2 months since diagnosis, with new small cysts quickly emerging in abdomen, chest, lower back, upper arms and with existing cysts on my forearms becoming more noticeable! Currently I only maybe 40-60 cysts with several inflammed, though I fear the day when they become disfiguring and consume my body..
2. Have any of you had experience with simple Fine Needle Aspiration? I've read that it's benefits are only temporary because it only extracts some of contents without removing cell wall (which are bound to refill). However, I'd like to give it a try but want to get a sense of what's potential scarring/hyperpigmentation and recurrence rate.
Thanks in advance for anybody that's can help and have been in my shoes before! I hope we can all work together to find ways to manage or cure SM!
Hey everyone.
How's everything doing? By the way, i'm really wondering if anyone here ever had chickenpox before? because I'm 24 this year and I never had chickenpox. If someone ever had it, what happened to the scar?
Sorry for the question because, if my guess is right. Could be the SM is the reason I never had chickenpox?
How's everything doing? By the way, i'm really wondering if anyone here ever had chickenpox before? because I'm 24 this year and I never had chickenpox. If someone ever had it, what happened to the scar?
Sorry for the question because, if my guess is right. Could be the SM is the reason I never had chickenpox?
hi nerfer,how did u get this info? i have sm for 20 yrs now...its so frustrating...im from the philippines...i hope u can give me more info.tnx much!!!
is there an oral medication or just topical??? im so desperate to get more info nerfer..i hope u can help me.
hi..i had sm since i was 15..im 35 now and i observed that it gets visible and of multiplies as you age...im very sad to know that 5fl is ineffective..but im still hoping for a miracle, a medical invention that can cure this disease.
for now i want to know what food i should avoid, what herbal meds i can take, and what vitamins i should take..hoping to get a response from you..thanks a lot!!
for now i want to know what food i should avoid, what herbal meds i can take, and what vitamins i should take..hoping to get a response from you..thanks a lot!!
i think this disease focuses mainly on the hair follicles in the body..the hairs dont come out normally as they should,,,they get clogged just like typical pimples..the problem is they grow in inner layers of the skin...i think they grow like vines in the veins..well just purely observations..i had sm for 20 yrs now...and still i cant find any cure. : (
hi jing jing!!!! i thought im the only filipina whos suffering from sm...we have almost the same condition..i have it almost in every part of my body,,,its so frustrating..it really lowers my self esteem , ruins my love life..etc...i want to know the derma that treated ur cysts in the neck.where can i find her?what procedure is she using to remove the cysts?..is it painful?i hope you'll visit this forum again...ill be happy if i can get in touch wt u personally...thanks!!
im happy that u can afford all those treatments that uve tried...i havent tried any treatments yet...we have the same condition..mine is also literally thousands..spreading all over my body...i get very hopeless sometimes.it ruined my life. : (...i hope u can share new discoveries in the days to come..God Bless.
GOOD NEWS BELOW!
Want to start off saying that I am on the same page. Everynight I pray for a cure or answer. I've lost so much self confidence, have no Idea how I ended up with a beautiful wife that looks past it. Unfortunately, Everytime I look in the mirror I just want to cry. I'm in Grand Rapids, MI, USA. If you're in the area I can recommend you to my dermatologist. I used to get very discouraged as every appointment was "Theres nothing we can do, i guess will cut a few out and stitch them up". One time I snapped. In the nicest way I could, I expressed the hate that no one cares about this and how much it effects a daily life. Usually, I have 5-8 removed at a time. Its a small incision and a single stitch. Not terrible, but the scar is about as noticeable as the cyst. Plus I need to take off time from work to have them removed (usually only a 45 min appointment), but then I also need to go back and have the stitch taken out! The next time I went in, I apologized again for being frustrated and he took it to thought that he should try something. I have several on my chest and stomach, but only a few on my back, I decided to have those removed to help prevent getting out of control. I was numbed up and started the encisions. After the 3rd out of the 8 we were doing that day, He stepped back and asked the assistant to get the machine ready. I can't remember the name, But i believe it was a "Hypadermic" needle? They set it at power 8. He used it to zap the cyst. I still have a scar, 6 months later however it looks like a freckle, not an excision indent. (Sorry if Im jumping around) There was one that hadn't gone away. By playing around, I noticed that if I popped them like a pimple, they will become flat. Since the "hypadermic needle" zapped the cell wall, he doesnt believe it will come back. So far so good. HOWEVER!!! I did go in again recently for some on my lower back side, and this time we were able to do 20! Unfotunatley, the only ones that went away were smaller. Bad news is, its not 100% and sure as hell not the cure that we want yet. But, I think it is worth a trial if your dermatologist offers this treatment. All smaller cysts we will continue to use the needle on for until we notice any issues. Unfortunately I do still need the ol' knive/drain/stitch method leaving nasty scars. I wish I could bring better news, but I do think if you have an area of smaller (up to 1/8" or so) cysts, this could really benefit you. Lets continue to build off each other.....Hopefully someday we can have our bodies back.
Want to start off saying that I am on the same page. Everynight I pray for a cure or answer. I've lost so much self confidence, have no Idea how I ended up with a beautiful wife that looks past it. Unfortunately, Everytime I look in the mirror I just want to cry. I'm in Grand Rapids, MI, USA. If you're in the area I can recommend you to my dermatologist. I used to get very discouraged as every appointment was "Theres nothing we can do, i guess will cut a few out and stitch them up". One time I snapped. In the nicest way I could, I expressed the hate that no one cares about this and how much it effects a daily life. Usually, I have 5-8 removed at a time. Its a small incision and a single stitch. Not terrible, but the scar is about as noticeable as the cyst. Plus I need to take off time from work to have them removed (usually only a 45 min appointment), but then I also need to go back and have the stitch taken out! The next time I went in, I apologized again for being frustrated and he took it to thought that he should try something. I have several on my chest and stomach, but only a few on my back, I decided to have those removed to help prevent getting out of control. I was numbed up and started the encisions. After the 3rd out of the 8 we were doing that day, He stepped back and asked the assistant to get the machine ready. I can't remember the name, But i believe it was a "Hypadermic" needle? They set it at power 8. He used it to zap the cyst. I still have a scar, 6 months later however it looks like a freckle, not an excision indent. (Sorry if Im jumping around) There was one that hadn't gone away. By playing around, I noticed that if I popped them like a pimple, they will become flat. Since the "hypadermic needle" zapped the cell wall, he doesnt believe it will come back. So far so good. HOWEVER!!! I did go in again recently for some on my lower back side, and this time we were able to do 20! Unfotunatley, the only ones that went away were smaller. Bad news is, its not 100% and sure as hell not the cure that we want yet. But, I think it is worth a trial if your dermatologist offers this treatment. All smaller cysts we will continue to use the needle on for until we notice any issues. Unfortunately I do still need the ol' knive/drain/stitch method leaving nasty scars. I wish I could bring better news, but I do think if you have an area of smaller (up to 1/8" or so) cysts, this could really benefit you. Lets continue to build off each other.....Hopefully someday we can have our bodies back.
hi hockey man..i havent tried any treatment yet,,nor even went for a biopsy..but im 100 % sure its sm...im dying to wear shorts but i have smaller ones in my upper legs..my lower legs look fine though.ill still be looking for a derma to try a procedure same as yours..i wish i can do that sooner..