RE: a treatment for skin lesions that works

January 26, 2007

Hi

Clare,

I was

reading your letter, and you’re not alone, let me tell you, I have

sores all over me head, they actually burn and yes I pick at them, (doesn’t

everyone) then they flake and bleed, and leave the hair very oily, when I’m

tired they bother me more, sometimes when I stay up too late I lay in bad and

scratch and pick at them until I fall asleep, the other day getting my hair

done, she had the water a little hot and I thought she just burned me, it didn’t

but the sores are so sensitive to even the temp of water I use in the shower, I

also have several different types of lesions all over my body, the ones on my

face are small slightly raised plaques, if I scratch them they peel and burn

and bleed, the same for the ones on my arms and chest, as I get down to my legs

they are small hard lesions under the skin and red, tender, then my feet I have

plaques like under the skin, you can’t even see them you can only feel

them, of course the sun will break me out in a red burning rash, which I can

just get on my driving arm if I don’t keep it covered when out. OK

how to treat them, well about 6 years ago I broke out with a head to toe

burning red rash, I felt like someone just burned me all over, I went to a

Dermatologist, she tried to tell me Lupus, but the biopsy said granulomas with

some name, I looked it up and came up with Sarcoid type granulomas, I

told her in the beginning I believe this is Sarcoid, and she said she’s

never seen a Sarcoid skin rash like that before, of course I asked how many she

had seen, I believe she said something like maybe 3, I took my findings to her

and she finally agreed it was Sarcoid, but that was after all the other (blood

tests) came back negative for Lupus.

So the

treatment of course immediate steroids, but she gave me some ointment I still

use to this day, it is the only thing that soothes them and keeps the ones on

face under control, it is “Protopic (tacrolimus ointment) 0.1%.

So this

is my magic ointment. I hope you can get some and try it, it is a

prescription. And a little bit goes a long way.

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

Debbie

<rozebudz36 (AT) yahoo (DOT) com> wrote:

Hi Clare,

Hope you don't mind me

butting in here, but I had to ask some questions since I have had some symptoms

that nobody else has had but me and it sounds like possibly you that I have

heard of anyway. I was diagnosed with sarc 4 yrs ago with subcutaneous plaques

and nodules (biopsied). I also had all the other symptoms to go with

it, it showed like I actually had Neurosarc but since my MRI and and

other tests were neg. they didn't think I had it. Then this past summer I

had a fall down my hallway stairs hitting my head on the railing. Ever

since I have had the sensation or feeling of wetness or pouring of liquid

internally between my skull and brain and down into the back of my neck.

I have had stiff neck, bad daily headaches, nausea and head pain. I have

had to sleep sitting up propped on pillows ever since. All the drs I have

seen (PCP, 2 neuros, 2 Psychs and several ER drs have all either looked at me

funny , told me it was anxiety, said it was impossible and they didn't believe

me and sent me to psych., and simply didn't believe me! I have had no

treatment - nobody wants to touch it. Recently (4 mos later) this sounds

really wierd but the liquid has seems to be possibly drying up inside my head a

bit? and coming out thru my pores feeling like gritty sand almost like a

dandruff. (Its not dandruff , because my scalp is clear otherwise, my

husband has checked and swears up and down, its not) .

Anyway, its also leaving sores here and there on my head. I have tried

some dandruff shampoo and condiitoner. Didn't help. I

know it was a long time ago for you, but what happened in your case? Did

they find anything to help you? Did it go away in time?

Has anyone else heard of the whacky scenerio? Of course in the meantime ,

none of the drs are helping me out and I have to figure this out by

myself.

Clare , help me if you can , please.

Thanks so much.

Debbie T.

Co-Moderator

Clare Weeman

<cweeman (AT) yahoo (DOT) com> wrote:

Hi Kimber,

I noticed your post and I totally know how you feel. Those nerves

effected in the head are wicked. I don't have the lung problem, but my sister

has been diagnosed with with that around same time as you, 1994, after a lung

wash. I have been diagnosed as a young child(age2) as having non-hodgekins

lymphoma and later neurosarcoidosis and was operated on in 1948 for tumors on

neck and head (internal and external) had bouts of diabetes insipidus and

Bell's palsy following the surgeries. Had all sorts of weird problems with head

sensations growing up. If I washed my hair and put it in a ponytail while wet.

I could not wear it down (loose) until I washed my hair or my head would hurt

so had I cried. Of course it was vice-versa on wet hair dried loose. At the

time I thought everyone suffered that way. Now I know otherwise. Current

symptoms: I can't sleep with a pillow or I wake up with a stiff neck. Six or

seven years ago I was having headaches every day and pain in my head. I threw

my pillow across the room one night and woke up in the morning feeling ok. So I

quit the pillow and do not have the painful stiff neck/headache. Still have the

other head pains, and eye problems, can't use commercial shampoos (back of head

scabs up) so use homemade soaps with no chemicals now. Ammonium Laureth Sulfate

and Lauryl sulfates are usually the first 2 ingredients in most shampoos (even

baby types) I guess they are used to add suds to the soap. I know the MSDS

(Material Safety Data Sheets) have a warning on them about side effects and the

immune system.

I, like yourself am also up to the point of waiting for a hearing

before the judge for SSDI claim. I can't seem to find a doctor because of not

being able to work due to many symptoms of the " Sarc monster " , so no

insurance or money enough to fight the good fight. I recently was approved for

Basic health here in Washington

and I pay $17 per month for the Molina state insurance. You may qualify for low

cost or free state

medical insurance in your home state. As for me, SSDI is rushing my claims

along so fast now I may not be able to use my " new insurance " fast

enough to get the latest diagnosis before the hearing date, but I am sure going

to try as my life hangs in the balance and that of my adult son who needs my

total support.

Good luck on your upcoming hearing and there is nothing insane about

you that I can read, just someone who needs some TLC. My prayers go out to you

and may you never give up hope.

Sincerely,

Clare

kimber31_1963 <kimber31_1963 (AT) yahoo (DOT) com>

wrote:

Its been a very long time

since I've posted here. I was diagnosed in

1994 with sarcoidosis on my trigeminal nerve, it has spread to the

nerves in my head. I have a secondary location of it in my lungs. the

pain in my face and head is getting worse. Its to the point I can't

stand the shower to hit my head, even laying my head on a pillow is

becoming difficult. Sleep has been a problem for a while now, this is

just adding to it. I have applied for social security and been denied,

I have an attorny now so we are waiting for a hearing. In the mean

time I have no insurance and have a hard time finding a doctor willing

to take payments. I live with my parents who are retired and so are

income is not great. This is probably more than anyone wants to know.

I just needed to talk to someone who understands this disease. Its

wrecking havoc with my body in more ways than one.

Thanks for listening to the sleep deprived rantings of a not quite

sane person.

Kimber

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January 26, 2007

Hi Marla, Thanks for the information. I am going to look that ointment up and see where I might find it around here. I am sorry we have the need to be searching for answers for these symptoms but I am glad there are the folks here on this website that share a bit of their pain, their sucesses and how they handle the "Sarcoid Monster". I guess somehow we are made stronger in faith by it...but I would rather be sharing recipes on how to make a beautiful german chocolate cake than how to stop sores on the head. You take care and I will let you know about trying that ointment. Sincerely, ClareMarla Bramer wrote: Hi Clare, I was reading your letter, and you’re not alone, let me tell you, I have sores all over me head, they actually burn and yes I pick at them, (doesn’t everyone) then they flake and bleed, and leave the hair very oily, when I’m tired they bother me more, sometimes when I stay up too late I lay in bad and scratch and pick at them until I fall asleep, the other day getting my hair done, she had the water a

little hot and I thought she just burned me, it didn’t but the sores are so sensitive to even the temp of water I use in the shower, I also have several different types of lesions all over my body, the ones on my face are small slightly raised plaques, if I scratch them they peel and burn and bleed, the same for the ones on my arms and chest, as I get down to my legs they are small hard lesions under the skin and red, tender, then my feet I have plaques like under the skin, you can’t even see them you can only feel them, of course the sun will break me out in a red burning rash, which I can just get on my driving arm if I don’t keep it covered when out. OK how to treat them, well about 6 years ago I broke out with a head to toe burning red rash, I felt like someone just burned me all over, I went to a Dermatologist, she tried to tell me Lupus, but the biopsy said granulomas with some name, I looked it up and came up with Sarcoid type granulomas, I told

her in the beginning I believe this is Sarcoid, and she said she’s never seen a Sarcoid skin rash like that before, of course I asked how many she had seen, I believe she said something like maybe 3, I took my findings to her and she finally agreed it was Sarcoid, but that was after all the other (blood tests) came back negative for Lupus. So the treatment of course immediate steroids, but she gave me some ointment I still use to this day, it is the only thing that soothes them and keeps the ones on face under control, it is “Protopic (tacrolimus ointment) 0.1%. So this is my magic ointment. I hope you can get

some and try it, it is a prescription. And a little bit goes a long way. Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" Debbie <rozebudz36 (AT) yahoo (DOT) com> wrote: Hi Clare, Hope you don't mind me butting in here, but I had to ask some questions since I have had some symptoms that nobody else has had but me and it sounds like possibly you that I have heard of anyway. I was diagnosed with sarc 4 yrs ago with subcutaneous plaques and nodules (biopsied). I also had all the other symptoms to go with it, it showed like I actually had Neurosarc but since my MRI and and other tests were neg. they

didn't think I had it. Then this past summer I had a fall down my hallway stairs hitting my head on the railing. Ever since I have had the sensation or feeling of wetness or pouring of liquid internally between my skull and brain and down into the back of my neck. I have had stiff neck, bad daily headaches, nausea and head pain. I have had to sleep sitting up propped on pillows ever since. All the drs I have seen (PCP, 2 neuros, 2 Psychs and several ER drs have all either looked at me funny , told me it was anxiety, said it was impossible and they didn't believe me and sent me to psych., and simply didn't believe me! I have had no treatment - nobody wants to touch it. Recently (4 mos later) this sounds really wierd but the liquid has seems to be possibly drying up inside my head a bit? and coming out thru my pores feeling like gritty sand almost like a dandruff. (Its not dandruff , because my scalp is clear otherwise, my

husband has checked and swears up and down, its not) .Anyway, its also leaving sores here and there on my head. I have tried some dandruff shampoo and condiitoner. Didn't help. I know it was a long time ago for you, but what happened in your case? Did they find anything to help you? Did it go away in time? Has anyone else heard of the whacky scenerio? Of course in the meantime , none of the drs are helping me out and I have to figure this out by myself. Clare , help me if you can , please. Thanks so much.Debbie T.Co-ModeratorClare Weeman <cweeman (AT) yahoo (DOT) com> wrote: Hi Kimber, I noticed your post and I totally know how you feel. Those nerves effected in the head are wicked. I don't have the lung problem, but my sister has been diagnosed with with that around same time as you, 1994, after a lung wash. I have been diagnosed as a young child(age2) as having non-hodgekins lymphoma and later neurosarcoidosis and was operated on in 1948 for tumors on neck and head (internal and external) had bouts of diabetes insipidus and Bell's palsy following the surgeries. Had all sorts of weird problems with head sensations growing up. If I washed my hair and put it in a ponytail while wet. I could not wear it down (loose) until I washed my hair or my head would hurt so had I cried. Of course it was vice-versa on wet hair dried loose. At the time I thought everyone suffered that way. Now I know otherwise. Current symptoms: I can't sleep with a pillow or I wake up with a stiff neck.

Six or seven years ago I was having headaches every day and pain in my head. I threw my pillow across the room one night and woke up in the morning feeling ok. So I quit the pillow and do not have the painful stiff neck/headache. Still have the other head pains, and eye problems, can't use commercial shampoos (back of head scabs up) so use homemade soaps with no chemicals now. Ammonium Laureth Sulfate and Lauryl sulfates are usually the first 2 ingredients in most shampoos (even baby types) I guess they are used to add suds to the soap. I know the MSDS (Material Safety Data Sheets) have a warning on them about side effects and the immune system. I, like yourself am also up to the point of waiting for a hearing before the judge for SSDI claim. I can't seem to find a doctor because of not being able to work due to many symptoms of the "Sarc

monster", so no insurance or money enough to fight the good fight. I recently was approved for Basic health here in Washington and I pay $17 per month for the Molina state insurance. You may qualify for low cost or free state medical insurance in your home state. As for me, SSDI is rushing my claims along so fast now I may not be able to use my "new insurance" fast enough to get the latest diagnosis before the hearing date, but I am sure going to try as my life hangs in the balance and that of my adult son who needs my total support. Good luck on your upcoming hearing and there is nothing insane about you that I can read, just someone who needs some TLC. My prayers go out to you and may you never give up hope. Sincerely, Clare kimber31_1963 <kimber31_1963 (AT) yahoo (DOT) com> wrote: Its been a very long time since I've posted here. I was diagnosed in 1994 with sarcoidosis on my trigeminal nerve, it has spread to the nerves in my head. I have a secondary location of it in my lungs. the pain in my face and head is getting worse. Its to the point I can't stand the

shower to hit my head, even laying my head on a pillow is becoming difficult. Sleep has been a problem for a while now, this is just adding to it. I have applied for social security and been denied, I have an attorny now so we are waiting for a hearing. In the mean time I have no insurance and have a hard time finding a doctor willing to take payments. I live with my parents who are retired and so are income is not great. This is probably more than anyone wants to know. I just needed to talk to someone who understands this disease. Its wrecking havoc with my body in more ways than one.Thanks for listening to the sleep deprived rantings of a not quite sane person.Kimber Need Mail bonding?Go to the Yahoo! Mail Q & A for great tips from Yahoo! Answers users. Bored stiff? Loosen up...Download and play hundreds of games for free on Yahoo! Games. Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends.

Bored stiff? Loosen up...Download and play hundreds of games for free on Yahoo! Games.

January 26, 2007

Hey Marla, ...good for you teaching that dermdoc something she didn't know. At least she listened to you and you got help. Wish all docs would take some facts as just facts and not some crazy women trying to teach them something they already know. yeah right. hugs S.Marla Bramer wrote: Hi Clare, I was reading your letter, and you’re not alone, let me tell you, I have sores all over me head, they actually burn and yes I pick at them, (doesn’t everyone) then they flake and bleed, and leave the hair very oily, when I’m tired they bother me more, sometimes when I stay up too late I lay in bad and scratch and pick at them until I fall asleep, the other day getting my hair done, she had the water a little hot and I thought she just burned me, it didn’t but the sores are so sensitive to even the temp of water I use in the shower, I also have several different types of lesions all over my body, the ones on my face are small slightly raised plaques, if I scratch them they peel and burn and bleed, the same for the ones on my arms

and chest, as I get down to my legs they are small hard lesions under the skin and red, tender, then my feet I have plaques like under the skin, you can’t even see them you can only feel them, of course the sun will break me out in a red burning rash, which I can just get on my driving arm if I don’t keep it covered when out. OK how to treat them, well about 6 years ago I broke out with a head to toe burning red rash, I felt like someone just burned me all over, I went to a Dermatologist, she tried to tell me Lupus, but the biopsy said granulomas with some name, I looked it up and came up with Sarcoid type granulomas, I told her in the beginning I believe this is Sarcoid, and she said she’s never seen a Sarcoid skin rash like that before, of course I asked how many she had seen, I believe she said something like maybe 3, I took my findings to her and she finally agreed it was Sarcoid, but that was after all the other (blood tests) came back negative for

Lupus. So the treatment of course immediate steroids, but she gave me some ointment I still use to this day, it is the only thing that soothes them and keeps the ones on face under control, it is “Protopic (tacrolimus ointment) 0.1%. So this is my magic ointment. I hope you can get some and try it, it is a prescription. And a little bit goes a long way. Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" Debbie <rozebudz36 (AT) yahoo (DOT) com> wrote: Hi Clare, Hope you don't mind me butting in here, but I had to ask some questions since I have had some symptoms that nobody else has had but me and it sounds like possibly you that I have heard of anyway. I was diagnosed with sarc 4 yrs ago with subcutaneous plaques and nodules (biopsied). I also had all the other symptoms to go with it, it showed like I actually had Neurosarc but since my MRI and and other tests were neg. they didn't think I had it. Then this past summer I had a fall down my hallway stairs hitting my head on the railing. Ever since I have had the sensation or feeling of wetness or pouring of liquid internally between my skull and brain and down into the back of my neck. I have had stiff neck, bad daily headaches, nausea and

head pain. I have had to sleep sitting up propped on pillows ever since. All the drs I have seen (PCP, 2 neuros, 2 Psychs and several ER drs have all either looked at me funny , told me it was anxiety, said it was impossible and they didn't believe me and sent me to psych., and simply didn't believe me! I have had no treatment - nobody wants to touch it. Recently (4 mos later) this sounds really wierd but the liquid has seems to be possibly drying up inside my head a bit? and coming out thru my pores feeling like gritty sand almost like a dandruff. (Its not dandruff , because my scalp is clear otherwise, my husband has checked and swears up and down, its not) .Anyway, its also leaving sores here and there on my head. I have tried some dandruff shampoo and condiitoner. Didn't help. I know it was a long time ago for you, but what happened in your case? Did they find anything to help you? Did it go

away in time? Has anyone else heard of the whacky scenerio? Of course in the meantime , none of the drs are helping me out and I have to figure this out by myself. Clare , help me if you can , please. Thanks so much.Debbie T.Co-ModeratorClare Weeman <cweeman (AT) yahoo (DOT) com> wrote: Hi Kimber, I noticed your post and I totally know how you feel. Those nerves effected in the head are wicked. I don't have the lung problem, but my sister has been diagnosed with with that around same time as you, 1994, after a lung wash. I have been diagnosed as a young child(age2) as

having non-hodgekins lymphoma and later neurosarcoidosis and was operated on in 1948 for tumors on neck and head (internal and external) had bouts of diabetes insipidus and Bell's palsy following the surgeries. Had all sorts of weird problems with head sensations growing up. If I washed my hair and put it in a ponytail while wet. I could not wear it down (loose) until I washed my hair or my head would hurt so had I cried. Of course it was vice-versa on wet hair dried loose. At the time I thought everyone suffered that way. Now I know otherwise. Current symptoms: I can't sleep with a pillow or I wake up with a stiff neck. Six or seven years ago I was having headaches every day and pain in my head. I threw my pillow across the room one night and woke up in the morning feeling ok. So I quit the pillow and do not have the painful stiff neck/headache. Still have the other head pains, and eye problems, can't use commercial shampoos (back of head scabs up) so use homemade soaps

with no chemicals now. Ammonium Laureth Sulfate and Lauryl sulfates are usually the first 2 ingredients in most shampoos (even baby types) I guess they are used to add suds to the soap. I know the MSDS (Material Safety Data Sheets) have a warning on them about side effects and the immune system. I, like yourself am also up to the point of waiting for a hearing before the judge for SSDI claim. I can't seem to find a doctor because of not being able to work due to many symptoms of the "Sarc monster", so no insurance or money enough to fight the good fight. I recently was approved for Basic health here in Washington and I pay $17 per month for the Molina state insurance. You may qualify for low cost or free state medical insurance in your home state. As for me, SSDI is rushing my claims along so fast

now I may not be able to use my "new insurance" fast enough to get the latest diagnosis before the hearing date, but I am sure going to try as my life hangs in the balance and that of my adult son who needs my total support. Good luck on your upcoming hearing and there is nothing insane about you that I can read, just someone who needs some TLC. My prayers go out to you and may you never give up hope. Sincerely, Clare kimber31_1963 <kimber31_1963 (AT) yahoo (DOT) com> wrote: Its been a very long time since I've posted here. I was diagnosed in 1994 with sarcoidosis on my trigeminal nerve, it has spread to the nerves in my head. I have a secondary location of it in my lungs. the pain in my face and head is getting worse. Its to the point I can't stand the shower to hit my head, even laying my head on a pillow is becoming difficult. Sleep has been a problem for a while now, this is just adding to it. I have applied for social security and been denied, I have an attorny now so we are waiting for a hearing. In the mean time I have no insurance and have a hard time finding a doctor willing to take

payments. I live with my parents who are retired and so are income is not great. This is probably more than anyone wants to know. I just needed to talk to someone who understands this disease. Its wrecking havoc with my body in more ways than one.Thanks for listening to the sleep deprived rantings of a not quite sane person.Kimber Need Mail bonding?Go to the Yahoo! Mail Q & A for great tips from Yahoo! Answers users. Bored stiff? Loosen up...Download and play hundreds of games for free on Yahoo! Games. Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to

friends.

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January 27, 2007

Thanks

, I wish all docs would listen more to us, but then they are only docsJ

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Solberg

Sent: Friday, January 26, 2007 9:12

PM

To: Neurosarcoidosis

Subject: RE: a

treatment for skin lesions that works

Hey Marla, ...good for you teaching that dermdoc

something she didn't know. At least she listened to you and you got

help. Wish all docs would take some facts as just facts and not some

crazy women trying to teach them something they already know. yeah

right. hugs S.

Marla Bramer

<mebramer (AT) gmail (DOT) com> wrote:

Hi

Clare,

I was

reading your letter, and you’re not alone, let me tell you, I have

sores all over me head, they actually burn and yes I pick at them,

(doesn’t everyone) then they flake and bleed, and leave the hair very

oily, when I’m tired they bother me more, sometimes when I stay up too

late I lay in bad and scratch and pick at them until I fall asleep, the other

day getting my hair done, she had the water a little hot and I thought she just

burned me, it didn’t but the sores are so sensitive to even the temp of

water I use in the shower, I also have several different types of lesions all

over my body, the ones on my face are small slightly raised plaques, if I

scratch them they peel and burn and bleed, the same for the ones on my arms and

chest, as I get down to my legs they are small hard lesions under the skin and

red, tender, then my feet I have plaques like under the skin, you can’t

even see them you can only feel them, of course the sun will break me out in a

red burning rash, which I can just get on my driving arm if I don’t keep

it covered when out. OK how to treat them, well about 6 years ago I

broke out with a head to toe burning red rash, I felt like someone just burned

me all over, I went to a Dermatologist, she tried to tell me Lupus, but the

biopsy said granulomas with some name, I looked it up and came up with Sarcoid

type granulomas, I told her in the beginning I believe this is Sarcoid,

and she said she’s never seen a Sarcoid skin rash like that before, of

course I asked how many she had seen, I believe she said something like maybe

3, I took my findings to her and she finally agreed it was Sarcoid, but that

was after all the other (blood tests) came back negative for Lupus.