Re: results

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,

That's great news! Thanks for sharing.

Patti

results

Our diet is the only thing we've changed around here, so I am attributing this

progress to SCD. I sure did not expect to see results this fast nor was I

expecting handwriting to improve because of diet.

W. - Zachariah age 12, SCD January 1, '07

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Well, I got back today from the Mayo Clinic in MN and the neurologist said that my MRI looks good. No sign of the inflammation right now. Am to decrease the Prednisone very slowly over the next nine months to hopefully keep it away even after I am off the meds. - a decrease of 5mg per month. - How much does your doctor decrease your meds to get you off of prednisone?? I get another MRI in three months and another visual field test in six months. I have permanent left eye damage that probably will not come back from because my optic nerves were swollen for so long that they are unable to repair themselves and that I will get use to using one eye and eventually adjust to it. The neurologist is concerned about my weight - I gained 55lbs in three months from

the med. and wants me to no matter what do 30 minutes a day of exercise - making sure I break a sweat each time. The endocrinologist is checking my calcium and two forms of vitamin D to make sure that my bones stay healthy with being on the prednisone for a longer period of time. Anyways that is just the brief of it from my doc appts. from my follow up visit this past week.

I tried logging in the chat room, but it must not be working. Thank you Rose for the time zone times to log in. I'm central time and I guess I missed it again.

Have a wonderful Easter everyone. Hope the Easter Bunny is good good to you.

To: neurosarcoidosis Sent: Thu, April 21, 2011 9:39:42 PMSubject: RE: weight gain

, it will be interesting to see the feedback on weight gain. In my case I actually lost a bunch of weight when the systemic sarc hit because I was too exhausted to eat, let alone fix meals, and for sure too tired to clean up. I lost 35# in about 4 months. Of course I gained back all of that & a lot more once I was on Pred.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 20 Apr 2011 11:32:30 -0700Subject: Re: weight gain

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up. I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue. so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain. just a thought seeing that we are all dealing with the weight. I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred. I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it, I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight? Sorry to say. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down. Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.Yes, I think "a little now and then" is more sustainable than a blanket

ban forever, that's my plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?xo > Hang in there:)>> Marla>> "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb>>>>>> > Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.>> xxoo D>>> >> > ,> > I'm sorry you have to go back to

high dose on the Pred. I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.> > I do hope your vision gets better. I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,> >> > Marla> >> > "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb> >> >> >> >> >> > > >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but

dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>

[Guest guest]

, I hope you can get off the Pred. but slow is a lot better, I've tried coming off it fast and ended up back on a higher dose, after 3 years, I was going off it like 5 mgs a month too I believe, but I had already started on the Methotrexate, and was able to come off the Pred. for the first time in the three years I'd been on it. 

I'll keep you in my prayers that you can get off it. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Well, I got back today from the Mayo Clinic in MN and the neurologist said that my MRI looks good.  No sign of the inflammation right now.  Am to decrease the Prednisone very slowly over the next nine months to hopefully keep it away even after I am off the meds.  - a decrease of 5mg per month. - How much does your doctor decrease your meds to get you off of  prednisone??  I get another MRI in three months and another visual field test in six months.  I have permanent left eye damage that probably will not come back from because my optic nerves were swollen for so long that they are unable to repair themselves and that I will get use to using one eye and eventually adjust to it.   The neurologist is concerned about my weight - I gained 55lbs in three months from

the med. and wants me to no matter what do 30 minutes a day of exercise - making sure I break a sweat each time.  The endocrinologist is checking my calcium and two forms of vitamin D to make sure that my bones stay healthy with being on the prednisone for a longer period of time.  Anyways that is just the brief of it from my doc appts. from my follow up visit this past week.

I tried logging in the chat room, but it must not be working.  Thank you Rose for the time zone times to log in.  I'm central time and I guess I missed it again. 

Have a wonderful Easter everyone.  Hope the Easter Bunny is good good to you. 

 

 

 

To: neurosarcoidosis

Sent: Thu, April 21, 2011 9:39:42 PMSubject: RE: weight gain 

, it will be interesting to see the feedback on weight gain.  In my case I actually lost a bunch of weight when the systemic sarc hit because I was too exhausted to eat, let alone fix meals, and for sure too tired to clean up.  I lost 35# in about 4 months.  Of course I gained back all of that & a lot more once I was on Pred.

Ramblin' RoseCo-owner/Moderator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

 

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 20 Apr 2011 11:32:30 -0700

Subject: Re: weight gain

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up.  I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue.  so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain.  just a thought seeing that we are all dealing with the weight.  I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred.  I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis

Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med  When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it,  I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight?  Sorry to say.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.

Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down.  Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.

Yes, I think " a little now and then " is more sustainable than a blanket

ban forever, that's my plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?

xo > Hang in there:)>> Marla>> " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

>>>>>>

> Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point  :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.

>> xxoo D>>> >> > ,> > I'm sorry you have to go back to

high dose on the Pred.  I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.> > I do hope your vision gets better.  I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,

> >> > Marla> >> > " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

> >> >> >> >> >> >

> >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but

dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?

> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community

>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-

> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>

>

[Guest guest]

Thank you for that. I appreciate it.

To: Neurosarcoidosis Sent: Fri, April 22, 2011 10:40:14 PMSubject: Re: results

, I hope you can get off the Pred. but slow is a lot better, I've tried coming off it fast and ended up back on a higher dose, after 3 years, I was going off it like 5 mgs a month too I believe, but I had already started on the Methotrexate, and was able to come off the Pred. for the first time in the three years I'd been on it. I'll keep you in my prayers that you can get off it. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

Well, I got back today from the Mayo Clinic in MN and the neurologist said that my MRI looks good. No sign of the inflammation right now. Am to decrease the Prednisone very slowly over the next nine months to hopefully keep it away even after I am off the meds. - a decrease of 5mg per month. - How much does your doctor decrease your meds to get you off of prednisone?? I get another MRI in three months and another visual field test in six months. I have permanent left eye damage that probably will not come back from because my optic nerves were swollen for so long that they are unable to repair themselves and that I will get use to using one eye and eventually adjust to it. The neurologist is concerned about my weight - I gained 55lbs in three months from the med. and wants me to no matter what do 30 minutes a day of exercise - making sure I break a sweat each time. The endocrinologist is

checking my calcium and two forms of vitamin D to make sure that my bones stay healthy with being on the prednisone for a longer period of time. Anyways that is just the brief of it from my doc appts. from my follow up visit this past week.

I tried logging in the chat room, but it must not be working. Thank you Rose for the time zone times to log in. I'm central time and I guess I missed it again.

Have a wonderful Easter everyone. Hope the Easter Bunny is good good to you.

To: neurosarcoidosis Sent: Thu, April 21, 2011 9:39:42 PMSubject: RE: weight gain

, it will be interesting to see the feedback on weight gain. In my case I actually lost a bunch of weight when the systemic sarc hit because I was too exhausted to eat, let alone fix meals, and for sure too tired to clean up. I lost 35# in about 4 months. Of course I gained back all of that & a lot more once I was on Pred.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 20 Apr 2011 11:32:30 -0700Subject: Re: weight gain

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up. I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue. so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain. just a thought seeing that we are all dealing with the weight. I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred. I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it, I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight? Sorry to say. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down. Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.Yes, I think "a little now and then" is more sustainable than a blanket ban forever, that's my

plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?xo > Hang in there:)>> Marla>> "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb>>>>>> > Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.>> xxoo D>>> >> > ,> > I'm sorry you have to go back to

high dose on the Pred. I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.> > I do hope your vision gets better. I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,> >> > Marla> >> > "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb> >> >> >> >> >> > > >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but

dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>

[Guest guest]

Hey, , at least you made it to the chat! I enjoyed talking with you, & Mike. Good news about the MRI.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Fri, 22 Apr 2011 19:13:08 -0700Subject: Re: results

Well, I got back today from the Mayo Clinic in MN and the neurologist said that my MRI looks good. No sign of the inflammation right now. Am to decrease the Prednisone very slowly over the next nine months to hopefully keep it away even after I am off the meds. - a decrease of 5mg per month. - How much does your doctor decrease your meds to get you off of prednisone?? I get another MRI in three months and another visual field test in six months. I have permanent left eye damage that probably will not come back from because my optic nerves were swollen for so long that they are unable to repair themselves and that I will get use to using one eye and eventually adjust to it. The neurologist is concerned about my weight - I gained 55lbs in three months from the med. and wants me to no matter what do 30 minutes a day of exercise - making sure I break a sweat each time. The endocrinologist is checking my calcium and two forms of vitamin D to make sure that my bones stay healthy with being on the prednisone for a longer period of time. Anyways that is just the brief of it from my doc appts. from my follow up visit this past week.

I tried logging in the chat room, but it must not be working. Thank you Rose for the time zone times to log in. I'm central time and I guess I missed it again.

Have a wonderful Easter everyone. Hope the Easter Bunny is good good to you.

To: neurosarcoidosis Sent: Thu, April 21, 2011 9:39:42 PMSubject: RE: weight gain

, it will be interesting to see the feedback on weight gain. In my case I actually lost a bunch of weight when the systemic sarc hit because I was too exhausted to eat, let alone fix meals, and for sure too tired to clean up. I lost 35# in about 4 months. Of course I gained back all of that & a lot more once I was on Pred.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 20 Apr 2011 11:32:30 -0700Subject: Re: weight gain

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up. I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue. so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain. just a thought seeing that we are all dealing with the weight. I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred. I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it, I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight? Sorry to say. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down. Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.Yes, I think "a little now and then" is more sustainable than a blanket ban forever, that's my plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?xo > Hang in there:)>> Marla>> "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb>>>>>> > Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.>> xxoo D>>> >> > ,> > I'm sorry you have to go back to high dose on the Pred. I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.> > I do hope your vision gets better. I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,> >> > Marla> >> > "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb> >> >> >> >> >> > > >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>