sarc & sun

[Guest guest]

It's interesting about the sun exposure thing. I don't have any problems with average sun exposure. I don't tolerate heat well, but sun in winter or cool days doesn't bother me at all. But starting back in about 1985 I had my first severe reaction to sun. I spent half my childhood in Arizona & had several vacations as a young adult in Florida--usual sunburns but no severe problems. Then we went to the Mississippi Gulf coast Easter weekend 1985 or '86. It wasn't hot at all, and I just sat in a lawn chair wearing shorts & tee for a few hours. My legs got burnt so bad they swelled up something awful! I couldn't tolerate them being dependent for 2-3 days. It was agony just getting up to the bathroom. I gained about 15# in fluid & they peeled for weeks. After that episode, as long as I used sunscreen faithfully I did okay. A couple of years later, after we moved to the Texas Rio Grande Valley, I went to South Padre Island with my kids. I kept sunscreen on everywhere, even the part of my hair! One place I forgot was my lips. By the next morning my lower lip was hugely swollen! I had to work in the prenatal clinic that day & looked ridiculous. Only one patient mentioned it, but I sure got some funny looks. It took a lot of Benadryl and 2 days to look normal. I've always wondered why I developed this sun sensitivity after so many years. This started about 10 years before I was diagnosed with sarc by hilar node biopsy (no symptoms or actual lung lesions at that time), but now I wonder if it could be sarc-related. It's so easy to blame everything on sarc, but I don't have any other suspects. Whatcha all think?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 6 Oct 2010 16:30:27 -0700Subject: Re: New to all of this.

No scarey stuff, but Vitamin D and Sarc don't get along. Alot of us have trouble with sun exposure because of this. There are many options other than prednisone when you get more stable. My neuro also recommended Lipoic Acid to help with the neuro-nerve damage Sarc does. There are others in this group who have specifically had issues with their eyes, and they can give a great deal of useful info. I'm so sorry you have needed to come to our group, but Welcome...you are among friends.

To: Neurosarcoidosis Sent: Sun, October 3, 2010 7:53:08 PMSubject: New to all of this.

Hi,I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had tingling in my hands and feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This all started on Aug. 24th

[Guest guest]

Hey ya all, I'm sorry I've missed a few Birthdays, I hope you all had good ones, and a day of rest. Happy Birthday to you all. Rose, I have a terrible time with the sun, and never had any problems growing up on the beaches in S. Calif. or at my friends pool lying out, reading books and drinking Tea, those were the days, I had a lot of exposure with no problems except the start of the year burn.  When I was a Senior in HS,

I laid out in the sun in the backyard with a girl friend, feel asleep and ended up with blisters on the back of my legs, arms and back, had to lay on my stomach, missed like 3 days of school, standing up to go to the BR as you mentioned about killed me, so in my pretty little white graduation dress my back side was peeling like mad.

Now, however I cannot tolerate the sun or heat for very long, I have lesions all over, and the sun just makes them burn like fire, and when I'm out very long, then I get new lesions, my eyes start to water in the sun, if out in it too much, I will get flu like symptoms, and if I don't get out of it and hydrate myself, I will end up vomiting with nasty head pain, like burning.  That only started after I broke out with a major burning rash all over my body, it was awful, that was like 10 years ago, so haven't had all along, was dx with Sarc in 94.  

Ok that's my story, so I do think that Sarc can't tolerate the sun, just my theory. I'm still trying to catch up on emails, but will be busy again, as just found out that my Mom has mild heart failure, found this out at her Px this week, and now need to go see a Cardiologist.

and I have to do all those really fun things, like a Mammogram and Colonoscopy, can we all say FUN:).MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

It's interesting about the sun exposure thing.  I don't have any problems with average sun exposure.  I don't tolerate heat well, but sun in winter or cool days doesn't bother me at all.  But starting back in about 1985 I had my first severe reaction to sun.  I spent half my childhood in Arizona & had several vacations as a young adult in Florida--usual sunburns but no severe problems.  Then we went to the Mississippi Gulf coast Easter weekend 1985 or '86.  It wasn't hot at all, and I just sat in a lawn chair wearing shorts & tee for a few hours.  My legs got burnt so bad they swelled up something awful!  I couldn't tolerate them being dependent for 2-3 days.  It was agony just getting up to the bathroom.  I gained about 15# in fluid & they peeled for weeks.  After that episode, as long as I used sunscreen faithfully I did okay.  A couple of years later, after we moved to the Texas Rio Grande Valley, I went to South Padre Island with my kids.  I kept sunscreen on everywhere, even the part of my hair!  One place I forgot was my lips.  By the next morning my lower lip was hugely swollen!  I had to work in the prenatal clinic that day & looked ridiculous.  Only one patient mentioned it, but I sure got some funny looks.  It took a lot of Benadryl and 2 days to look normal.  I've always wondered why I developed this sun sensitivity after so many years.  This started about 10 years before I was diagnosed with sarc by hilar node biopsy (no symptoms or actual lung lesions at that time), but now I wonder if it could be sarc-related.  It's so easy to blame everything on sarc, but I don't have any other suspects.  Whatcha all think?

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

   

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 6 Oct 2010 16:30:27 -0700

Subject: Re: New to all of this.

No scarey stuff, but Vitamin D and Sarc don't get along.  Alot of us have trouble with sun exposure because of this.  There are many options other than prednisone when you get more stable.  My neuro also recommended Lipoic Acid to help with the neuro-nerve damage Sarc does.  There are others in this group who have specifically had issues with their eyes, and they can give a great deal of useful info.  I'm so sorry you have needed to come to our group, but Welcome...you are among friends.

To: Neurosarcoidosis

Sent: Sun, October 3, 2010 7:53:08 PMSubject: New to all of this. 

Hi,I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had tingling in my hands and feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This all started on Aug. 24th

[Guest guest]

Rose, I had started having symptoms with the sun aruond the time my sarc got bad enough to know it was definitely there. To this day, if I go out in the sun for 15 to 20 minutes I get weak, I'm totally exhausted and I feel like I cannot sit up. I have to lie down and get still for about 2-4 hrs, and I sleep like someone who hasn't slept in a week. I have learned to plan my excursions at night or dusk, and I absolutely love cloudy days because I can do what I want. It happens without fail, and has been going on since the early 2000's. There are a couple of people on ths site that are the same way, I remember them writing about it.

To: neurosarcoidosis Sent: Wed, October 6, 2010 9:46:12 PMSubject: sarc & sun

It's interesting about the sun exposure thing. I don't have any problems with average sun exposure. I don't tolerate heat well, but sun in winter or cool days doesn't bother me at all. But starting back in about 1985 I had my first severe reaction to sun. I spent half my childhood in Arizona & had several vacations as a young adult in Florida--usual sunburns but no severe problems. Then we went to the Mississippi Gulf coast Easter weekend 1985 or '86. It wasn't hot at all, and I just sat in a lawn chair wearing shorts & tee for a few hours. My legs got burnt so bad they swelled up something awful! I couldn't tolerate them being dependent for 2-3 days. It was agony just getting up to the bathroom. I gained about 15# in fluid & they peeled for weeks. After that episode, as long as I used sunscreen faithfully I did okay. A couple of years later, after we moved to the

Texas Rio Grande Valley, I went to South Padre Island with my kids. I kept sunscreen on everywhere, even the part of my hair! One place I forgot was my lips. By the next morning my lower lip was hugely swollen! I had to work in the prenatal clinic that day & looked ridiculous. Only one patient mentioned it, but I sure got some funny looks. It took a lot of Benadryl and 2 days to look normal. I've always wondered why I developed this sun sensitivity after so many years. This started about 10 years before I was diagnosed with sarc by hilar node biopsy (no symptoms or actual lung lesions at that time), but now I wonder if it could be sarc-related. It's so easy to blame everything on sarc, but I don't have any other suspects. Whatcha all think?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 6 Oct 2010 16:30:27 -0700Subject: Re: New to all of this.

No scarey stuff, but Vitamin D and Sarc don't get along. Alot of us have trouble with sun exposure because of this. There are many options other than prednisone when you get more stable. My neuro also recommended Lipoic Acid to help with the neuro-nerve damage Sarc does. There are others in this group who have specifically had issues with their eyes, and they can give a great deal of useful info. I'm so sorry you have needed to come to our group, but Welcome...you are among friends.

To: Neurosarcoidosis Sent: Sun, October 3, 2010 7:53:08 PMSubject: New to all of this. Hi,I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had

tingling in my hands and feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This all started on Aug. 24th

R

[Guest guest]

I having symptoms just like you Connie, if I'm out very long I get sick, feel nauseated, weak and need to lay down too.  I know it's the Sarc.  The AC went out in my car a couple weeks ago, and the fireplace went out at the end of the winter season, so have to get that fixed before it gets too cold, so waited on the AC until next summer, and when I was out very long, it just about killed  me to run errands, my 89 yo Mom was with me and doesn't like wind blowing in her face, so I could only have my window, some days I wasn't sure I was going to make it home, I must of drank 2 water bottles an hour, I'm so glad fall is here, I'm OK with the temps in the 60s-low 70s, but when it gets really cold, don't like that again, but the heater works so I'm good.  Don't know how much I loved that AC until I lost it:(    All's good now.

Blessings, MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Rose,  I had started having symptoms with the sun aruond the time my sarc got bad enough to know it was definitely there.  To this day, if I go out in the sun for 15 to 20 minutes I get weak, I'm totally exhausted and I feel like I cannot sit up.  I have to lie down and get still for about 2-4 hrs, and I sleep like someone who hasn't slept in a week.  I have learned to plan my excursions at night or dusk, and I absolutely love cloudy days because I can do what I want.  It happens without fail, and has been going on since the early 2000's.  There are a couple of people on ths site that are the same way, I remember them writing about it.

To: neurosarcoidosis

Sent: Wed, October 6, 2010 9:46:12 PMSubject: sarc & sun 

It's interesting about the sun exposure thing.  I don't have any problems with average sun exposure.  I don't tolerate heat well, but sun in winter or cool days doesn't bother me at all.  But starting back in about 1985 I had my first severe reaction to sun.  I spent half my childhood in Arizona & had several vacations as a young adult in Florida--usual sunburns but no severe problems.  Then we went to the Mississippi Gulf coast Easter weekend 1985 or '86.  It wasn't hot at all, and I just sat in a lawn chair wearing shorts & tee for a few hours.  My legs got burnt so bad they swelled up something awful!  I couldn't tolerate them being dependent for 2-3 days.  It was agony just getting up to the bathroom.  I gained about 15# in fluid & they peeled for weeks.  After that episode, as long as I used sunscreen faithfully I did okay.  A couple of years later, after we moved to the

Texas Rio Grande Valley, I went to South Padre Island with my kids.  I kept sunscreen on everywhere, even the part of my hair!  One place I forgot was my lips.  By the next morning my lower lip was hugely swollen!  I had to work in the prenatal clinic that day & looked ridiculous.  Only one patient mentioned it, but I sure got some funny looks.  It took a lot of Benadryl and 2 days to look normal.  I've always wondered why I developed this sun sensitivity after so many years.  This started about 10 years before I was diagnosed with sarc by hilar node biopsy (no symptoms or actual lung lesions at that time), but now I wonder if it could be sarc-related.  It's so easy to blame everything on sarc, but I don't have any other suspects.  Whatcha all think?

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

   

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 6 Oct 2010 16:30:27 -0700

Subject: Re: New to all of this.

No scarey stuff, but Vitamin D and Sarc don't get along.  Alot of us have trouble with sun exposure because of this.  There are many options other than prednisone when you get more stable.  My neuro also recommended Lipoic Acid to help with the neuro-nerve damage Sarc does.  There are others in this group who have specifically had issues with their eyes, and they can give a great deal of useful info.  I'm so sorry you have needed to come to our group, but Welcome...you are among friends.

To: Neurosarcoidosis

Sent: Sun, October 3, 2010 7:53:08 PMSubject: New to all of this.  Hi,I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had

tingling in my hands and feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This all started on Aug. 24th

R

[Guest guest]

Marla, you just go on & enjoy your colonoscopy, etc! I've had 3, because the first one had polyps, which were benign, but he wanted to repeat it in a couple of years, just to be safe. More polyps on the 2nd one, so repeated it in 5 years. Had one polyp on the last one, all benign, so I get to wait 10 years now! Yay! Hope they've got your mom's CHF under control. Remember that term "the sandwich generation?" I guess I have mixed feelings; all my parents & grandparents are gone, even my mother-in-law (I never considered her an ex, even after getting divorced). So that strain of worrying about the older generation while dealing with the kids & grandkids is relieved a bit. But I'd rather have my mom back, if she was herself, before the Alzheimer's.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Thu, 7 Oct 2010 22:03:51 -0600Subject: Re: sarc & sun

Hey ya all, I'm sorry I've missed a few Birthdays, I hope you all had good ones, and a day of rest. Happy Birthday to you all. Rose, I have a terrible time with the sun, and never had any problems growing up on the beaches in S. Calif. or at my friends pool lying out, reading books and drinking Tea, those were the days, I had a lot of exposure with no problems except the start of the year burn. When I was a Senior in HS, I laid out in the sun in the backyard with a girl friend, feel asleep and ended up with blisters on the back of my legs, arms and back, had to lay on my stomach, missed like 3 days of school, standing up to go to the BR as you mentioned about killed me, so in my pretty little white graduation dress my back side was peeling like mad. Now, however I cannot tolerate the sun or heat for very long, I have lesions all over, and the sun just makes them burn like fire, and when I'm out very long, then I get new lesions, my eyes start to water in the sun, if out in it too much, I will get flu like symptoms, and if I don't get out of it and hydrate myself, I will end up vomiting with nasty head pain, like burning. That only started after I broke out with a major burning rash all over my body, it was awful, that was like 10 years ago, so haven't had all along, was dx with Sarc in 94. Ok that's my story, so I do think that Sarc can't tolerate the sun, just my theory. I'm still trying to catch up on emails, but will be busy again, as just found out that my Mom has mild heart failure, found this out at her Px this week, and now need to go see a Cardiologist.and I have to do all those really fun things, like a Mammogram and Colonoscopy, can we all say FUN:).MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

It's interesting about the sun exposure thing. I don't have any problems with average sun exposure. I don't tolerate heat well, but sun in winter or cool days doesn't bother me at all. But starting back in about 1985 I had my first severe reaction to sun. I spent half my childhood in Arizona & had several vacations as a young adult in Florida--usual sunburns but no severe problems. Then we went to the Mississippi Gulf coast Easter weekend 1985 or '86. It wasn't hot at all, and I just sat in a lawn chair wearing shorts & tee for a few hours. My legs got burnt so bad they swelled up something awful! I couldn't tolerate them being dependent for 2-3 days. It was agony just getting up to the bathroom. I gained about 15# in fluid & they peeled for weeks. After that episode, as long as I used sunscreen faithfully I did okay. A couple of years later, after we moved to the Texas Rio Grande Valley, I went to South Padre Island with my kids. I kept sunscreen on everywhere, even the part of my hair! One place I forgot was my lips. By the next morning my lower lip was hugely swollen! I had to work in the prenatal clinic that day & looked ridiculous. Only one patient mentioned it, but I sure got some funny looks. It took a lot of Benadryl and 2 days to look normal. I've always wondered why I developed this sun sensitivity after so many years. This started about 10 years before I was diagnosed with sarc by hilar node biopsy (no symptoms or actual lung lesions at that time), but now I wonder if it could be sarc-related. It's so easy to blame everything on sarc, but I don't have any other suspects. Whatcha all think?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 6 Oct 2010 16:30:27 -0700Subject: Re: New to all of this.

No scarey stuff, but Vitamin D and Sarc don't get along. Alot of us have trouble with sun exposure because of this. There are many options other than prednisone when you get more stable. My neuro also recommended Lipoic Acid to help with the neuro-nerve damage Sarc does. There are others in this group who have specifically had issues with their eyes, and they can give a great deal of useful info. I'm so sorry you have needed to come to our group, but Welcome...you are among friends.

To: Neurosarcoidosis Sent: Sun, October 3, 2010 7:53:08 PMSubject: New to all of this. Hi,I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had tingling in my hands and feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This all started on Aug. 24th

[Guest guest]

Rose, my Mom actually has LVH, mild heart failure, however you would never know it, she has NO symptoms, but have an appt Nov. 9 with a Cardiologist to make sure all is well.  she's a big help, I have been in my office all day today, and she cleaned the dishes, and

folds all the laundry, I just put stuff in the washer, one time she but something dark in the whites, and my husband is Type A, so told me to put the things in the laundry I think it's just so if I screw up he can blame and not Grandma lol.  

There building a whole fitness/well center not far from me with a warm therapy pool, but you have to become a member, probably too much, but I need to go and check it out,  I think that would feel good to exercise in warm water, can't go into just any pool, as if a little cold, I am in pain. 

I do have a Pilate rubber band type thing that I use for my legs, and it helps my mid section too, something I need a lot of help on:)  and I walk on the treadmill if I am not already hurting, I do it before I go to bed, and so far that seems to be working best, if I do it during the day, then there goes my walking for the day. Compromise guess that's the word for the day. 

 MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Marla, you just go on & enjoy your colonoscopy, etc!  I've had 3, because the first one had polyps, which were benign, but he wanted to repeat it in a couple of years, just to be safe.  More polyps on the 2nd one, so repeated it in 5 years.  Had one polyp on the last one, all benign, so I get to wait 10 years now!  Yay!       Hope they've got your mom's CHF under control.  Remember that term " the sandwich generation? "   I guess I have mixed feelings; all my parents & grandparents are gone, even my mother-in-law (I never considered her an ex, even after getting divorced).  So that strain of worrying about the older generation while dealing with the kids & grandkids is relieved a bit.  But I'd rather have my mom back, if she was herself, before the Alzheimer's.  

 

 

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

  

To: Neurosarcoidosis From: mebramer@...Date: Thu, 7 Oct 2010 22:03:51 -0600

Subject: Re: sarc & sun

Hey ya all, I'm sorry I've missed a few Birthdays, I hope you all had good ones, and a day of rest. Happy Birthday to you all. Rose, I have a terrible time with the sun, and never had any problems growing up on the beaches in S. Calif. or at my friends pool lying out, reading books and drinking Tea, those were the days, I had a lot of exposure with no problems except the start of the year burn.  When I was a Senior in HS,

I laid out in the sun in the backyard with a girl friend, feel asleep and ended up with blisters on the back of my legs, arms and back, had to lay on my stomach, missed like 3 days of school, standing up to go to the BR as you mentioned about killed me, so in my pretty little white graduation dress my back side was peeling like mad.

Now, however I cannot tolerate the sun or heat for very long, I have lesions all over, and the sun just makes them burn like fire, and when I'm out very long, then I get new lesions, my eyes start to water in the sun, if out in it too much, I will get flu like symptoms, and if I don't get out of it and hydrate myself, I will end up vomiting with nasty head pain, like burning.  That only started after I broke out with a major burning rash all over my body, it was awful, that was like 10 years ago, so haven't had all along, was dx with Sarc in 94.  

Ok that's my story, so I do think that Sarc can't tolerate the sun, just my theory. I'm still trying to catch up on emails, but will be busy again, as just found out that my Mom has mild heart failure, found this out at her Px this week, and now need to go see a Cardiologist.

and I have to do all those really fun things, like a Mammogram and Colonoscopy, can we all say FUN:).MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

It's interesting about the sun exposure thing.  I don't have any problems with average sun exposure.  I don't tolerate heat well, but sun in winter or cool days doesn't bother me at all.  But starting back in about 1985 I had my first severe reaction to sun.  I spent half my childhood in Arizona & had several vacations as a young adult in Florida--usual sunburns but no severe problems.  Then we went to the Mississippi Gulf coast Easter weekend 1985 or '86.  It wasn't hot at all, and I just sat in a lawn chair wearing shorts & tee for a few hours.  My legs got burnt so bad they swelled up something awful!  I couldn't tolerate them being dependent for 2-3 days.  It was agony just getting up to the bathroom.  I gained about 15# in fluid & they peeled for weeks.  After that episode, as long as I used sunscreen faithfully I did okay.  A couple of years later, after we moved to the Texas Rio Grande Valley, I went to South Padre Island with my kids.  I kept sunscreen on everywhere, even the part of my hair!  One place I forgot was my lips.  By the next morning my lower lip was hugely swollen!  I had to work in the prenatal clinic that day & looked ridiculous.  Only one patient mentioned it, but I sure got some funny looks.  It took a lot of Benadryl and 2 days to look normal.  I've always wondered why I developed this sun sensitivity after so many years.  This started about 10 years before I was diagnosed with sarc by hilar node biopsy (no symptoms or actual lung lesions at that time), but now I wonder if it could be sarc-related.  It's so easy to blame everything on sarc, but I don't have any other suspects.  Whatcha all think?

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

   

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 6 Oct 2010 16:30:27 -0700

Subject: Re: New to all of this.

No scarey stuff, but Vitamin D and Sarc don't get along.  Alot of us have trouble with sun exposure because of this.  There are many options other than prednisone when you get more stable.  My neuro also recommended Lipoic Acid to help with the neuro-nerve damage Sarc does.  There are others in this group who have specifically had issues with their eyes, and they can give a great deal of useful info.  I'm so sorry you have needed to come to our group, but Welcome...you are among friends.

To: Neurosarcoidosis

Sent: Sun, October 3, 2010 7:53:08 PMSubject: New to all of this.  Hi,I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had tingling in my hands and feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This all started on Aug. 24th

[Guest guest]

Connie, that's one of the frustrating things, not just sarc, of course, but any disease. People respond so differently. It seems to be the tropical-type sun that gives me the really awful reaction. Here in Indiana we had a really hot summer, but I could be out in the sun as long as I could cool off. Like out in the yard I would literally hose myself off when I got too hot. I can kayak for a couple of hours on a sunny day, but I'm going to be scooping river water over my head every few minutes! I know others that can't tolerate even indirect sunlight, like through a car window. We really have to be vigilant & pay attention to our bodies' clues, then respect them.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 9 Oct 2010 17:25:24 -0700Subject: Re: sarc & sun

Rose, I had started having symptoms with the sun aruond the time my sarc got bad enough to know it was definitely there. To this day, if I go out in the sun for 15 to 20 minutes I get weak, I'm totally exhausted and I feel like I cannot sit up. I have to lie down and get still for about 2-4 hrs, and I sleep like someone who hasn't slept in a week. I have learned to plan my excursions at night or dusk, and I absolutely love cloudy days because I can do what I want. It happens without fail, and has been going on since the early 2000's. There are a couple of people on ths site that are the same way, I remember them writing about it.

To: neurosarcoidosis Sent: Wed, October 6, 2010 9:46:12 PMSubject: sarc & sun

It's interesting about the sun exposure thing. I don't have any problems with average sun exposure. I don't tolerate heat well, but sun in winter or cool days doesn't bother me at all. But starting back in about 1985 I had my first severe reaction to sun. I spent half my childhood in Arizona & had several vacations as a young adult in Florida--usual sunburns but no severe problems. Then we went to the Mississippi Gulf coast Easter weekend 1985 or '86. It wasn't hot at all, and I just sat in a lawn chair wearing shorts & tee for a few hours. My legs got burnt so bad they swelled up something awful! I couldn't tolerate them being dependent for 2-3 days. It was agony just getting up to the bathroom. I gained about 15# in fluid & they peeled for weeks. After that episode, as long as I used sunscreen faithfully I did okay. A couple of years later, after we moved to the Texas Rio Grande Valley, I went to South Padre Island with my kids. I kept sunscreen on everywhere, even the part of my hair! One place I forgot was my lips. By the next morning my lower lip was hugely swollen! I had to work in the prenatal clinic that day & looked ridiculous. Only one patient mentioned it, but I sure got some funny looks. It took a lot of Benadryl and 2 days to look normal. I've always wondered why I developed this sun sensitivity after so many years. This started about 10 years before I was diagnosed with sarc by hilar node biopsy (no symptoms or actual lung lesions at that time), but now I wonder if it could be sarc-related. It's so easy to blame everything on sarc, but I don't have any other suspects. Whatcha all think?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 6 Oct 2010 16:30:27 -0700Subject: Re: New to all of this.

No scarey stuff, but Vitamin D and Sarc don't get along. Alot of us have trouble with sun exposure because of this. There are many options other than prednisone when you get more stable. My neuro also recommended Lipoic Acid to help with the neuro-nerve damage Sarc does. There are others in this group who have specifically had issues with their eyes, and they can give a great deal of useful info. I'm so sorry you have needed to come to our group, but Welcome...you are among friends.

To: Neurosarcoidosis Sent: Sun, October 3, 2010 7:53:08 PMSubject: New to all of this. Hi,I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had tingling in my hands and feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This all started on Aug. 24th

R