Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 I tend to have a problem with both, if I get a little hot, I get overheated fast, but if I get a little cold then I am freezing right away, and anything hot on my left side is felt with more intense heat, same with cold and the left side. And right it is not like menopause, I too had those hot flashes, this is so different. Sorry I don’t post much, summer is so busy with all the kids home, and we have an extra kid move in this summer, long story, but I have 3 teenage boys now eating me out of house and home, wow has my grocery bill gone up! I have been trying to read some emails. Welcome to all of you who are new you have found a wonderful support group, it’s like family here, and a wealth of information, far more then you will ever receive from your doctors. Blessings to all, Marl a " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Tuesday, August 07, 2007 9:04 AM To: Neurosarcoidosis Subject: RE: Anyone else crazy like I am? Hi, . Glad to hear from you. What kind of doctor is the guy who told you that heat intolerance is not common in sarc? I would guess that most of these group members experience that. I had problems for the first couple of years convincing my docs that it wasn't menopause. Female + hot + sweat must equal menopause, right? I kept telling them that I had gone through menopause about 10 years earlier and that this was different. I think that's pretty much a dead issue now. There are a couple of nice sites in the Links section about how the brain works. If your hypothalamus is affected, your thermostat is likely to go wacky, and it seems to prefer overheating to freezing. This is An Educator's Guide to the Brain. http://www.tbi.org/library/html/educators_guide.html The other one is The Human Brain from Wikipedia. http://en.wikipedia.org/wiki/Human_brain#Overview These are both interesting, readable & help you understand what's happening with various symptoms. Don't forget to check out the Links section; lots of good stuff in there. The info is at the bottom of each group email, including this one. Ramblin' Rose Moderator From: " turtlesnap123 " <turtlesnap123 (AT) yahoo (DOT) com> Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Anyone else crazy like I am? Date: Tue, 07 Aug 2007 13:36:37 -0000 Hi everyone, I am new to this (for the past few months) and have been reading most of what everyone posts. I was wondering if anyone out there has the same thing (Tony, you and I chat, so I know you do...so I am not totally crazy!)... Plugged ears almost like you have water in them for the better part of two years. This started with terrible pain (like someone was jabbing a pencil in my ears) and the pain still comes and goes, though not as bad. Black dots in the eyes that recently developed, although not floaters. The doc does not know what they are but has determined they are not floaters (since they do not float and are fixated). These I have constantly in my eyes. Also, a thymus gland (so they believe) that has developed a mind of its own and is enlarging. All of this while on 2.5 grams of Cellcept. Not to mention the constant burning and numbness and pain. Oh, and one more question...Tony, I know it bothers you, but does the heat and humidity effect anyone else's symptoms? I asked the doc about this and he said this NOT typical in Sarcoid, but in MS...just curious! Hope everyone is well! Tease your brain--play Clink! Win cool prizes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 Three teenage boys? Wow! I used to holler, "The locusts are coming! The locusts are coming!" when I had just 2 teenage girls at the house. You have my sympathies, Marla. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: overheatedDate: Tue, 7 Aug 2007 10:42:51 -0600 I tend to have a problem with both, if I get a little hot, I get overheated fast, but if I get a little cold then I am freezing right away, and anything hot on my left side is felt with more intense heat, same with cold and the left side. And right it is not like menopause, I too had those hot flashes, this is so different. Sorry I don’t post much, summer is so busy with all the kids home, and we have an extra kid move in this summer, long story, but I have 3 teenage boys now eating me out of house and home, wow has my grocery bill gone up! I have been trying to read some emails. Welcome to all of you who are new you have found a wonderful support group, it’s like family here, and a wealth of information, far more then you will ever receive from your doctors. Blessings to all, Marl a "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Tuesday, August 07, 2007 9:04 AMTo: Neurosarcoidosis Subject: RE: Anyone else crazy like I am? Hi, . Glad to hear from you. What kind of doctor is the guy who told you that heat intolerance is not common in sarc? I would guess that most of these group members experience that. I had problems for the first couple of years convincing my docs that it wasn't menopause. Female + hot + sweat must equal menopause, right? I kept telling them that I had gone through menopause about 10 years earlier and that this was different. I think that's pretty much a dead issue now. There are a couple of nice sites in the Links section about how the brain works. If your hypothalamus is affected, your thermostat is likely to go wacky, and it seems to prefer overheating to freezing. This is An Educator's Guide to the Brain. http://www.tbi.org/library/html/educators_guide.html The other one is The Human Brain from Wikipedia. http://en.wikipedia.org/wiki/Human_brain#Overview These are both interesting, readable & help you understand what's happening with various symptoms. Don't forget to check out the Links section; lots of good stuff in there. The info is at the bottom of each group email, including this one. Ramblin' Rose Moderator From: "turtlesnap123" <turtlesnap123 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Anyone else crazy like I am?Date: Tue, 07 Aug 2007 13:36:37 -0000 Hi everyone,I am new to this (for the past few months) and have been reading mostof what everyone posts. I was wondering if anyone out there has thesame thing (Tony, you and I chat, so I know you do...so I am nottotally crazy!)...Plugged ears almost like you have water in them for the better part oftwo years. This started with terrible pain (like someone was jabbinga pencil in my ears) and the pain still comes and goes, though not asbad. Black dots in the eyes that recently developed, although notfloaters. The doc does not know what they are but has determined theyare not floaters (since they do not float and are fixated). These Ihave constantly in my eyes. Also, a thymus gland (so they believe)that has developed a mind of its own and is enlarging. All of thiswhile on 2.5 grams of Cellcept. Not to mention the constant burningand numbness and pain.Oh, and one more question...Tony, I know it bothers you, but does theheat and humidity effect anyone else's symptoms? I asked the docabout this and he said this NOT typical in Sarcoid, but in MS...justcurious!Hope everyone is well! Tease your brain--play Clink! Win cool prizes! See what you’re getting into…before you go there Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 Thanks Rose, appreciate it. I have to go back for another round of neruopsych testing, stupid, I can just show them the dumb things I’ve been doing and will automatically fail. Like; I just flew to Dallas for the MK Seminar and on the way home found out that I booked my flight in and out on the same day, so $350 later, I was able to fly home, now that is a biggie and everyone says oh anyone can do that, ya especially if there brain is muss! Other wise life is good, and I just keep going! Love to all, Marla " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Tuesday, August 07, 2007 11:01 AM To: Neurosarcoidosis Subject: RE: overheated Three teenage boys? Wow! I used to holler, " The locusts are coming! The locusts are coming! " when I had just 2 teenage girls at the house. You have my sympathies, Marla. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 From: " Marla Bramer " <mebramer (AT) gmail (DOT) com> Reply-To: Neurosarcoidosis To: <Neurosarcoidosis > Subject: RE: overheated Date: Tue, 7 Aug 2007 10:42:51 -0600 I tend to have a problem with both, if I get a little hot, I get overheated fast, but if I get a little cold then I am freezing right away, and anything hot on my left side is felt with more intense heat, same with cold and the left side. And right it is not like menopause, I too had those hot flashes, this is so different. Sorry I don’t post much, summer is so busy with all the kids home, and we have an extra kid move in this summer, long story, but I have 3 teenage boys now eating me out of house and home, wow has my grocery bill gone up! I have been trying to read some emails. Welcome to all of you who are new you have found a wonderful support group, it’s like family here, and a wealth of information, far more then you will ever receive from your doctors. Blessings to all, Marl a " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Rose Sent: Tuesday, August 07, 2007 9:04 AM To: Neurosarcoidosis Subject: RE: Anyone else crazy like I am? Hi, . Glad to hear from you. What kind of doctor is the guy who told you that heat intolerance is not common in sarc? I would guess that most of these group members experience that. I had problems for the first couple of years convincing my docs that it wasn't menopause. Female + hot + sweat must equal menopause, right? I kept telling them that I had gone through menopause about 10 years earlier and that this was different. I think that's pretty much a dead issue now. There are a couple of nice sites in the Links section about how the brain works. If your hypothalamus is affected, your thermostat is likely to go wacky, and it seems to prefer overheating to freezing. This is An Educator's Guide to the Brain. http://www.tbi.org/library/html/educators_guide.html The other one is The Human Brain from Wikipedia. http://en.wikipedia.org/wiki/Human_brain#Overview These are both interesting, readable & help you understand what's happening with various symptoms. Don't forget to check out the Links section; lots of good stuff in there. The info is at the bottom of each group email, including this one. Ramblin' Rose Moderator From: " turtlesnap123 " <turtlesnap123 (AT) yahoo (DOT) com> Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Anyone else crazy like I am? Date: Tue, 07 Aug 2007 13:36:37 -0000 Hi everyone, I am new to this (for the past few months) and have been reading most of what everyone posts. I was wondering if anyone out there has the same thing (Tony, you and I chat, so I know you do...so I am not totally crazy!)... Plugged ears almost like you have water in them for the better part of two years. This started with terrible pain (like someone was jabbing a pencil in my ears) and the pain still comes and goes, though not as bad. Black dots in the eyes that recently developed, although not floaters. The doc does not know what they are but has determined they are not floaters (since they do not float and are fixated). These I have constantly in my eyes. Also, a thymus gland (so they believe) that has developed a mind of its own and is enlarging. All of this while on 2.5 grams of Cellcept. Not to mention the constant burning and numbness and pain. Oh, and one more question...Tony, I know it bothers you, but does the heat and humidity effect anyone else's symptoms? I asked the doc about this and he said this NOT typical in Sarcoid, but in MS...just curious! Hope everyone is well! Tease your brain--play Clink! Win cool prizes! See what you’re getting into…before you go there Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.