Re: just need to connect again with those who understand

[Guest guest]

Kimber,You will be in my prayers. I too was dx in 1994. From what I've heard an attorney is the way to go with disability. The three "F's" have gotten me this far: Faith, Family, and Friends. God bless you,Beckykimber31_1963 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

Any questions? Get answers on any topic at Yahoo! Answers. Try it now.

[Guest guest]

Kimber, you are not alone in this as you will find many a kindred

spirit here. Becky put it so well...Faith, Friends & Family. You are

in our thoughts & prayers. Tony

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

>

>

>

>

>

>

> ---------------------------------

> Any questions? Get answers on any topic at Yahoo! Answers. Try it

now.

>

[Guest guest]

Hi Kimber, I struggle with the same problem, my doctor prescribed topomax which has helped me a lot. At least I can rest my head on the pillow and I can sleep a a bit better now. It does not take it away totally but it helps you survive each day. Maybe you can ask you Dr. to try you on it to see it it would work for you. Good look.Shyrose "You cannot do a kindness too soon. because you never know how soon it will be too late." just need to connect again with those who understand

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

Make free worldwide PC-to-PC calls. Try the new Yahoo! Canada Messenger with Voice

[Guest guest]

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 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.

[Guest guest]

Hi Kimber,

We always want to hear what’s going

on, and welcome back. I too was dx in 1994 with pulmonary sarc, and in the

past 12 years actually had two remissions, but now for the past 6 years I have

had active Sarc, more neuro now, and all the fun that goes along with that.

I will keep you in my prayers.

Marla

Bramer

" Faith

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

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Mac Tosh

Sent: Friday, January 19, 2007

6:01 AM

To: Neurosarcoidosis

Subject: Re:

just need to connect again with those who understand

Kimber,

You will be in my prayers. I too was dx in 1994. From what I've heard an

attorney is the way to go with disability. The three " F's " have

gotten me this far: Faith, Family, and Friends.

God bless you,

Becky

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

Any questions? Get answers on any topic at Yahoo!

Answers. Try it now.

[Guest guest]

Hi Kimber. I also have Trigeminal Neuralgia from NS. The only thing

that helped with that particular pain was Tegretol. It makes you quite

dopey so I would take the higher doses at night, lower in the morning.

I've been on 3 anti-seizure meds, each of which worked on different

nerves don't know why, but there it is), so finding what works is

trial and error. If you get a prescription, just get some of it filled

to see if they work, before dropping a lot of money filling the entire

prescription I've wasted precious $ on meds only to find they didn't

work on a particular pain. I think Tegretol worked pretty quickly.

Some take a while to kick in. Other meds I've tried are Neurontin and

Lamictal. Here is link which is good for looking up meds :

http://www.nlm.nih.gov/medlineplus/druginformation.html

Good luck. -

[Guest guest]

Thank you all so much for your responses and support. I hate to say

this but its nice to know there are others who are going through the

same or similar things that I have been going through. I have tried

many of the medications like tegretol and the others. I seem to be

one of the few that have all the side effects from the meds.

Lamictal actually worked for me for a while and I hope that if I

ever get insurance again I can go back on it to see if it will help

again. Thank you for all your thoughts and prayers and know that

mine go back to all of you.

Kimber

>

> Hi Kimber. I also have Trigeminal Neuralgia from NS. The only thing

> that helped with that particular pain was Tegretol. It makes you

quite

> dopey so I would take the higher doses at night, lower in the

morning.

> I've been on 3 anti-seizure meds, each of which worked on different

> nerves don't know why, but there it is), so finding what works is

> trial and error. If you get a prescription, just get some of it

filled

> to see if they work, before dropping a lot of money filling the

entire

> prescription I've wasted precious $ on meds only to find they

didn't

> work on a particular pain. I think Tegretol worked pretty quickly.

> Some take a while to kick in. Other meds I've tried are Neurontin

and

> Lamictal. Here is link which is good for looking up meds :

>

> http://www.nlm.nih.gov/medlineplus/druginformation.html

>

> Good luck. -

>

[Guest guest]

Talk about freaking out. I have not had a chance to read my email in quite a while due to computer access. I went to the neurologist yesterday, and because of what has been happening to the ® side of my head & face & now my eye he informed me that I have trigeminal neuralia. Things have been getting worse lately with my head & face, but I didn't know what was wrong, the lightening strikes are not fun. In the past I have had a couple that left me screaming at the top of my lungs (I don't do this as a rule for anything)I was going to email the group because I have such a time with bad reactions to medicine and he is starting me on Lyrica. He is also adamant that I start plavix because I can't take aspirin, he is worried about strokes. Are these medicines a no-no with sarc? As always thank you for all your

help...............Conniekimber31_1963 wrote: Thank you all so much for your responses and support. I hate to say this but its nice to know there are others who are going through the same or similar things that I have been going through. I have tried many of the medications like tegretol and the others. I seem to be one of the few that have all the side effects from the meds. Lamictal actually worked for me for a while and I hope that if I ever get insurance again I can

go back on it to see if it will help again. Thank you for all your thoughts and prayers and know that mine go back to all of you.Kimber>> Hi Kimber. I also have Trigeminal Neuralgia from NS. The only thing> that helped with that particular pain was Tegretol. It makes you quite> dopey so I would take the higher doses at night, lower in the morning.> I've been on 3 anti-seizure meds, each of which worked on different> nerves don't know why, but there it is), so finding what works is> trial and error. If you get a prescription, just get some of it filled> to see if they work, before dropping a lot of money filling the entire> prescription I've wasted precious $ on meds only to find they didn't> work on a

particular pain. I think Tegretol worked pretty quickly.> Some take a while to kick in. Other meds I've tried are Neurontin and> Lamictal. Here is link which is good for looking up meds :> > http://www.nlm.nih.gov/medlineplus/druginformation.html> > Good luck. - >

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[Guest guest]

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 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 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.

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[Guest guest]

Debbie, I wonder if a dermatologist(familiar with sarc) could help with some of your problems....? Sometimes we just don't use the terms they want to hear. I totally believe you cuz, though not having those symptoms exactly, I have had some strange skin problems. Hang in there...hugs S.Debbie 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.

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[Guest guest]

Hi ... I was just dx with Trigeminal Neuralgia, I thought I was already in the most horrible pain before, but this I simply cannot describe. I don't understand......I can't understand, I am supposed to be in remission from NS yet I don't seem to be. Can someone explain this to me. I am really, really tired. I have been trying to be really strong..oh strong is not the word or is it I don't know anymore, now another kind of pain the worse of all....I don't know anymore and I am really really trying "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: just need to connect again with those who understand

Hi Kimber. I also have Trigeminal Neuralgia from NS. The only thing

that helped with that particular pain was Tegretol. It makes you quite

dopey so I would take the higher doses at night, lower in the morning.

I've been on 3 anti-seizure meds, each of which worked on different

nerves don't know why, but there it is), so finding what works is

trial and error. If you get a prescription, just get some of it filled

to see if they work, before dropping a lot of money filling the entire

prescription I've wasted precious $ on meds only to find they didn't

work on a particular pain. I think Tegretol worked pretty quickly.

Some take a while to kick in. Other meds I've tried are Neurontin and

Lamictal. Here is link which is good for looking up meds :

http://www.nlm. nih.gov/medlinep lus/druginformat ion.html

Good luck. -

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[Guest guest]

Hi, Those weird head problems are more current and I could never get the help I needed for them either. So I turned to the internet and have spent quite a bit of time reading. I read, think, read, think, and if the site makes sense I cut and paste the "good stuff". I have been treating my self and I have been feeling better...just the knowing I'm doing "something" seems to heal. I know I am not crazy, I know my body feels this way, and sometimes I feel I am the only one left to "fix" it. So here is my discoveries so far that works for me... 1. I quit using shampoo and conditioner in August 2006. Now use coconut oil rubbed into the hair and scalp before washing the hair. For soap I use mild dish soap or handsoap (I make my own) (this stopped the feeling of liquid draining out through my head and the sores healed up) But when

I tried the shampoo again the sores came back...so at this writing I am still using the coconut oil and homemade soap. I think there are no added chemicals in my soap recipe and maybe that is why it works. I suppose pure glyerin soap would do. The coconut oil is as close to mother's milk as Mother nature can get. ...or so the websites say. 2. I drink licorice tea (stash brand) to reduce imflamations in my head. So now my eyes are no loner hurting, sore, dry or blurry. But the licorice causes a spike in my Blood pressure. 3. For the higher Blood Pressure I breathe simmering vapors of Celtic Sea salt & Tea Tree oil several times a day, to get more oxygen into my lungs. For some reason this works for me and it is my understanding of using the vapors is that it also kills mycotoxins living in the body. They can't live in a oxygen rich environment. 4. Also on a strict diet free of: milk products, sugar, all grains, most fruit, oils (except coconut oil) I eat a sort of Rainbow diet (colors) with a balance of small portions of meat, 7-9 vegetables a day and make flour from ground nuts, sunflower seeds, quinoa seeds...and use arrowroot for thickener and an egg as a binder and coconut oil instead of butter. Mostly I use Stevia powder for sweetening food (very low glycemic) and celtic sea salt to get some iodine (have hypothyroid problems as well) I just made an appointment with another doctor and am writing up my symptoms to take with me as I think it is just too much information to tell a new doctor on the first visit. This way he can read it all later, alone in his office....well hopefully he will read it.

LOL! Anyway try quitting the shampoo and use something else to wash the hair with. I have a friend who swears by dish soap and she has beautiful hair. I think she made the remark; If you got to put into into your mouth, the product that washes the dishes needs to be food safe, therefore safe to use on her hair too. I hope you don't think of me as a luney tune as my kids do for doing the above stuff. It is just desparation drives me to try anything reasonable. Sincerly, Clare Solberg wrote: Debbie, I wonder if a dermatologist(familiar with sarc) could help with some of your problems....? Sometimes we just don't use the terms they want to hear. I totally believe you cuz, though not having those symptoms exactly, I have had some strange skin problems. Hang in there...hugs S.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.

We won't tell. Get more on shows you hate to love(and love to hate): Yahoo! TV's Guilty Pleasures list.

[Guest guest]

Hi, You sound so brave and yet so tired. Don't ever give up your fight to live a better life. I feel the very nature of NS is that it is always on the move (sort of like a world traveler) seeking new areas of your body....maybe weaker areas for it will rest for awhile until the latest meds drive it onto another, and yet another site until we put it in remission or it worsens. I live with NS like a roll call-when I open my eyes in the morning I do a mental check of myself. Yup, my eyes are working, then one by one I check all the arms, legs, back, front, etc. If they appear to work ok (wee exercises) then I tumble out of my bed for the day. If the eyes are sore I put my dark shades on and "Here I am World". I hope someone on this site will have a better idea of possible why's, for you? I just wanted to let you know I care about you and wish you strength and some relief too. Sincerely, ClareShyrose Keira wrote: Hi ... I was just dx with Trigeminal Neuralgia, I thought I was already in the most horrible pain before, but this I simply cannot describe. I don't understand......I can't understand, I am supposed to be in remission from NS yet I don't seem to be. Can someone explain this to me. I am really, really tired. I have been

trying to be really strong..oh strong is not the word or is it I don't know anymore, now another kind of pain the worse of all....I don't know anymore and I am really really trying "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: just need to connect again with those who understand Hi Kimber. I also have Trigeminal Neuralgia from NS. The only thingthat helped with that particular pain was Tegretol. It makes

you quitedopey so I would take the higher doses at night, lower in the morning.I've been on 3 anti-seizure meds, each of which worked on differentnerves don't know why, but there it is), so finding what works istrial and error. If you get a prescription, just get some of it filledto see if they work, before dropping a lot of money filling the entireprescription I've wasted precious $ on meds only to find they didn'twork on a particular pain. I think Tegretol worked pretty quickly.Some take a while to kick in. Other meds I've tried are Neurontin andLamictal. Here is link which is good for looking up meds :http://www.nlm. nih.gov/medlinep lus/druginformat ion.htmlGood luck. - All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane.

TV dinner still cooling?Check out "Tonight's Picks" on Yahoo! TV.

[Guest guest]

I’m

sending up my prayers for you.

Marla

Bramer

" Faith

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

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Shyrose Keira

Sent: Friday, January 26, 2007

10:43 AM

To: Neurosarcoidosis

Subject: Re:

Re: just need to connect again with those who understand

Hi ... I was just dx with Trigeminal Neuralgia, I thought I was already

in the most horrible pain before, but this I simply cannot describe. I don't

understand......I can't understand, I am supposed to be in remission from

NS yet I don't seem to be. Can someone explain this to me. I am really,

really tired. I have been trying to be really strong..oh strong is not the word

or is it I don't know anymore, now another kind of pain the worse of all....I

don't know anymore and I am really really trying

" You cannot do a kindness too soon. because you never know how

soon it will be too late. "

Re: just need to connect again with those who

understand

Hi Kimber. I also have Trigeminal Neuralgia from NS.

The only thing

that helped with that particular pain was Tegretol. It makes you quite

dopey so I would take the higher doses at night, lower in the morning.

I've been on 3 anti-seizure meds, each of which worked on different

nerves don't know why, but there it is), so finding what works is

trial and error. If you get a prescription, just get some of it filled

to see if they work, before dropping a lot of money filling the entire

prescription I've wasted precious $ on meds only to find they didn't

work on a particular pain. I think Tegretol worked pretty quickly.

Some take a while to kick in. Other meds I've tried are Neurontin and

Lamictal. Here is link which is good for looking up meds :

http://www.nlm. nih.gov/medlinep lus/druginformat ion.html

Good luck. -

All new Yahoo! Mail -

Get a sneak peak at messages with a handy reading pane.

[Guest guest]

Clare,

thanks for the information, can always use new ideas. Hope you have a good dayJ

Marla

Bramer

" Faith

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

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Clare Weeman

Sent: Friday, January 26, 2007

3:27 PM

To: Neurosarcoidosis

Subject: Re:

just need to connect again with those who understand

Hi,

Those weird head problems are more current and I could never get the

help I needed for them either. So I turned to the internet and have spent quite

a bit of time reading. I read, think, read, think, and if the site makes sense

I cut and paste the " good stuff " . I have been treating my self and I

have been feeling better...just the knowing I'm doing " something "

seems to heal. I know I am not crazy, I know my body feels this way, and

sometimes I feel I am the only one left to " fix " it. So here is my

discoveries so far that works for me...

1. I quit using shampoo and conditioner in August 2006.

Now use coconut oil rubbed into the hair and scalp

before washing the hair.

For soap I use mild dish soap or handsoap (I make my

own)

(this stopped the feeling of liquid draining out

through my head and the sores healed up)

But when I tried the shampoo again the sores

came back...so at this writing I am still

using the coconut oil and homemade soap. I think

there are no added chemicals in my

soap recipe and maybe that is why it works. I

suppose pure glyerin soap would do. The coconut oil is as close to mother's

milk as Mother nature can get.

...or so the websites say.

2. I drink licorice tea (stash brand) to reduce

imflamations in my head. So now my eyes

are no loner hurting, sore, dry or blurry. But the

licorice causes a spike in my Blood

pressure.

3. For the higher Blood Pressure I breathe simmering vapors of Celtic Sea

salt & Tea Tree

oil several times a day, to get more oxygen into my

lungs. For some reason this works for me and it is my

understanding of using the vapors is that it also

kills mycotoxins living in the body. They can't live in a oxygen rich

environment.

4. Also on a strict diet free of: milk products, sugar, all

grains, most fruit, oils (except coconut oil) I eat a sort of Rainbow diet

(colors) with a balance of small portions of meat, 7-9 vegetables a day and

make flour from ground nuts, sunflower seeds, quinoa seeds...and use arrowroot

for thickener and an egg as a binder and coconut oil instead of butter. Mostly

I use Stevia powder for sweetening food (very low glycemic) and celtic sea salt

to get some iodine (have hypothyroid problems as well)

I just made an appointment with another doctor and am writing up my

symptoms to take with me as I think it is just too much information to tell a

new doctor on the first visit. This way he can read it all later, alone in his

office....well hopefully he will read it. LOL!

Anyway try quitting the shampoo and use something else to wash the hair

with. I have a friend who swears by dish soap and she has beautiful hair. I

think she made the remark; If you got to put into into your mouth, the product

that washes the dishes needs to be food safe, therefore safe to use on her hair

too.

I hope you don't think of me as a luney tune as my kids do for doing

the above stuff. It is just desparation drives me to try anything

reasonable.

Sincerly,

Clare

Solberg

<mary_s777 (AT) yahoo (DOT) com> wrote:

Debbie, I wonder if a dermatologist(familiar

with sarc) could help with some of your problems....? Sometimes we

just don't use the terms they want to hear. I totally believe you cuz,

though not having those symptoms exactly, I have had some strange skin

problems. Hang in there...hugs S.

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

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.

We won't tell. Get more on shows

you hate to love

(and love to hate): Yahoo!

TV's Guilty Pleasures list.