Re: Re: hot flashes and and sarc

[Guest guest]

Shauna,

I've found an article in Epilesy and sarcoidosis that talks about the parenchyml system. This is our pituatary, hypothalmus, thyroid regulation, the parathyroids (they control calcium uptake) and more. When any of these systems get out of whack, as well as the adrenals, then body temperature regulation goes out the window.

Here's the site address: http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html

[Guest guest]

Hi Tracie,I tried to find this site last time you posted it and just tried again. When I go there it says "File not found"...I'm really interested in this and maybe I'm doing something wrong...yikes!Blessings,Beckytiodaat@... wrote: Shauna, I've found an article in Epilesy and sarcoidosis that talks about the parenchyml system. This is our pituatary, hypothalmus, thyroid regulation, the

parathyroids (they control calcium uptake) and more. When any of these systems get out of whack, as well as the adrenals, then body temperature regulation goes out the window. Here's the site address: http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html __________________________________________________

[Guest guest]

Hi Shauna, I have also been having problems with muscle cramps as well. To be honest as long as your potassium levels are ok i don't think there is much you can do. Stretching can help especially before you go to bed and maybe try a magnesium supplement if your doctor ok's it? .Shauna Glaspie wrote: Thanks Tracie, I think you are right about things being out of

whack. I have been having muscle cramps lately all over and I think someone told me before that it may have something to do with my systems. Several blood test I have taken have shown this. I was told to take calcium a while back but stopped because I thought that you could get to much calcium and that causes another problem which I forgot what is was now. I have been having muscle cramps in legs, feet, back, arms, hands and elsewhere lately. I think something is off again. Should I have more test to see? I too the doctor once before and he told me to take quinine but that didn't seem to help. Shauna in Alt. __________________________________________________

[Guest guest]

Hi, Shauna. I have a granddaughter named a, another named Shaina. Gets confusing at times. Re: the temperature regulation, I started having problems about 4 years ago, when I was still working as a midwife. I would perspire so heavily that water would pool in my glasses & sometimes drip onto the sterile drapes. My hair would get so damp that my hearing aid would mess up. Excessive perspiring is called hyperhidrosis. 2-1/2 yrs. ago my son & daughter were both getting married, in June & end of July. I rarely wear makeup, but I wanted to look a little nicer for the weddings, but I didn't want sweat pouring down my face & my hair looking like a wet rat. My neurologist suggested Botox or a drug call Robinul. I did some research on both. I wasn't that enthused about the Robinul, but I called my dermatologist & asked about the Botox. He said that he could give me injections around the hairline & stop or decrease the perspiration from there for several months. Well, I went ahead & did it (It cost $500 for the forehead area & one side of the nape of my neck; he said that area was harder to get & try the one side first. If it worked I could come back and do the other side.) The forehead shots worked great! My hair & makeup stayed nice and it lasted for about 4 months. The neckline shots didn't do anything, but I was more concerned with my face. Now in San for my daughter's wedding the end of July (outside, no less!), I took a dose of the Robinul also, for insurance. Never again. I got so dry that I think I could have had a heat stroke if I hadn't been able to go into the house with AC. I didn't perspire at all for several hours. I had cold towels & ice packs all over me for a couple of hours until I felt better. I did take two pills; I was supposed to take 1 or 2 & should have tried one first to see how I reacted. So if you ever try Robinul, be sure to try the lowest dose first. Anyway, I was very happy with the results of the Botox & since the injections were up at the hairline, no worry about accidentally paralyzing my eye or something. I wouldn't spend the money for it again unless I had something really special like the weddings.

I use cool bands--like folded bandanas with little beads inside. You soak it in water for a few minutes until it puffs up, then blot it dry & put it around your neck, wherever. As it warms up, just turn it over. It will stay cool for several hours & you can re-use it. I buy mine at Walmart in the sporting goods department.

I also carry little battery-powered fans everywhere. I get them at Walmart for a dollar; at the end of summer they'll mark them down to $.50 or even a quarter. Then I buy a bunch of them. They take 2 AA batteries & come with batteries. So they are really a bargain. I've tried the ones that have a water bottle attached & mist you, but I didn't like it. I have gotten so hot (just my face, mostly) that I tied a bra onto my head with ice packs inside to cool my face. There used to be a picture of that in the Photos section, but I think I took it off awhile back. I also carry instant ice packs (the kind you crush to activate) when I'm going somewhere that might be hot, like on a plane. If we have to just sit on the runway for awhile, the air cond. doesn't work & it gets so stifling I can't stand it unless I have my little fan, and the ice pack really helps too. I haven't flown since all the new restrictions, so I'm not sure if the ice packs would be a problem; they aren't a liquid or really a gel. Anyway, I go prepared, everywhere!

Hope this helps a little. It's taken me 3 days to complete this post. I'm trying to get back on a regular basis, but several issues are making it hard. I'm glad you are here. It's a little late, but welcome to you and all the other new members!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: hot flashes and and sarcDate: Mon, 18 Dec 2006 15:58:06 -0800 (PST)

Hi Becky and sarcid group,

I was just responding to the temperature changes. I too have hot flashes. I don't know if it is the prednisone or part of the sarcoid. I think maybe it is sarcoids because the body can regulate temperature normally. I think I read this somewhere. It changes all of a sudden and I am dripping sweat all over. I don't know for sure what it is though.

Also I do have memory problems. For a period of time I couldn't remember where my bathroom was or other places that I had been too I thought were new. I remebered people but some things I could not recall. It has gotten better with prednisone although sometimes I do have to write things down because I will forget them in minutes and will not recall them until much later.

Lately I have been trying to reduce my prednisone from 10 mg to five but find I need a nap during the day. Does this seem normal? I have notice this change since I tapered down a bit.

Anyway hope all of you are doing ok. And once again I am glad to have you all here to talk to about this.

Take care,

Shauna in atlanta

__________________________________________________

[Guest guest]

Hey Rosie, I know its been hard on you to get on here, but its good to see you. Luv ya, Debbie T.Rose wrote: Hi, Shauna. I have a granddaughter named a, another named Shaina. Gets confusing at times. Re: the temperature regulation, I started having problems about 4 years ago, when I was still working as a midwife. I would perspire so heavily that water would pool in my glasses & sometimes drip onto the sterile drapes. My hair would get so damp that my hearing aid would mess up. Excessive perspiring is called hyperhidrosis. 2-1/2 yrs. ago my son & daughter were both getting married, in June & end of July. I rarely wear makeup,

but I wanted to look a little nicer for the weddings, but I didn't want sweat pouring down my face & my hair looking like a wet rat. My neurologist suggested Botox or a drug call Robinul. I did some research on both. I wasn't that enthused about the Robinul, but I called my dermatologist & asked about the Botox. He said that he could give me injections around the hairline & stop or decrease the perspiration from there for several months. Well, I went ahead & did it (It cost $500 for the forehead area & one side of the nape of my neck; he said that area was harder to get & try the one side first. If it worked I could come back and do the other side.) The forehead shots worked great! My hair & makeup stayed nice and it lasted for about 4 months. The neckline shots didn't do anything, but I was more concerned with my face. Now in San for my daughter's wedding the end of July

(outside, no less!), I took a dose of the Robinul also, for insurance. Never again. I got so dry that I think I could have had a heat stroke if I hadn't been able to go into the house with AC. I didn't perspire at all for several hours. I had cold towels & ice packs all over me for a couple of hours until I felt better. I did take two pills; I was supposed to take 1 or 2 & should have tried one first to see how I reacted. So if you ever try Robinul, be sure to try the lowest dose first. Anyway, I was very happy with the results of the Botox & since the injections were up at the hairline, no worry about accidentally paralyzing my eye or something. I wouldn't spend the money for it again unless I had something really special like the weddings. I use cool bands--like folded bandanas with little beads inside. You soak it in water for a few minutes until it puffs up, then blot it

dry & put it around your neck, wherever. As it warms up, just turn it over. It will stay cool for several hours & you can re-use it. I buy mine at Walmart in the sporting goods department. I also carry little battery-powered fans everywhere. I get them at Walmart for a dollar; at the end of summer they'll mark them down to $.50 or even a quarter. Then I buy a bunch of them. They take 2 AA batteries & come with batteries. So they are really a bargain. I've tried the ones that have a water bottle attached & mist you, but I didn't like it. I have gotten so hot (just my face, mostly) that I tied a bra onto my head with ice packs inside to cool my face. There used to be a picture of that in the Photos section, but I think I took it off awhile back. I also carry instant ice packs (the kind you crush to activate) when I'm going somewhere that might be hot, like on a

plane. If we have to just sit on the runway for awhile, the air cond. doesn't work & it gets so stifling I can't stand it unless I have my little fan, and the ice pack really helps too. I haven't flown since all the new restrictions, so I'm not sure if the ice packs would be a problem; they aren't a liquid or really a gel. Anyway, I go prepared, everywhere! Hope this helps a little. It's taken me 3 days to complete this post. I'm trying to get back on a regular basis, but several issues are making it hard. I'm glad you are here. It's a little late, but welcome to you and all the other new members! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: hot flashes and and sarcDate: Mon, 18 Dec 2006 15:58:06 -0800 (PST) Hi Becky and

sarcid group, I was just responding to the temperature changes. I too have hot flashes. I don't know if it is the prednisone or part of the sarcoid. I think maybe it is sarcoids because the body can regulate temperature normally. I think I read this somewhere. It changes all of a sudden and I am dripping sweat all over. I don't know for sure what it is though. Also I do have memory problems. For a period of time I couldn't remember where my bathroom was or other places that I had been too I thought were new. I remebered people but some things I could not recall. It has gotten better with

prednisone although sometimes I do have to write things down because I will forget them in minutes and will not recall them until much later. Lately I have been trying to reduce my prednisone from 10 mg to five but find I need a nap during the day. Does this seem normal? I have notice this change since I tapered down a bit. Anyway hope all of you are doing ok. And once again I am glad to have you all here to talk to about this. Take

care, Shauna in atlanta __________________________________________________

[Guest guest]

Hi Rose and all,Robinal was the IV med we used with ECT pts...yikes! I greatly dislike the excessive sweating. At least when I'm on the cold swing I can cover up. I read or heard or something that the sweats are connected to disease activity. If that's the case I'm in the active phase everyday. The pred probably doesn't help but I was having the sweats before I was on pred. Now, it's worse. BTW I've been on the Cellcept for 3 weeks now and so far so good as far as side effects. Dr. Moller at s Hopkins was the physician who prescribed it since the methotrexate and plaquenil didn't work out for me. There is one thing that is weird (not the Cellcept b/c was occurring prior to starting it) and I'm wondering if anyone else has experienced this: I wake up every night around 2-3 AM with this tremulousness inside...not my sugar (I test it and it's fine)...can't actually see myself shaking but feel like I'm moving (but I'm not). Lasts from a few minutes to an hour and then

gone. Blessings,BeckyDebbie wrote: Hey Rosie, I know its been hard on you to get on here, but its good to see you. Luv ya, Debbie T.Rose <mamadogrose (AT) hotmail (DOT) com> wrote: Hi, Shauna. I have a granddaughter named a, another named Shaina. Gets confusing at times. Re: the

temperature regulation, I started having problems about 4 years ago, when I was still working as a midwife. I would perspire so heavily that water would pool in my glasses & sometimes drip onto the sterile drapes. My hair would get so damp that my hearing aid would mess up. Excessive perspiring is called hyperhidrosis. 2-1/2 yrs. ago my son & daughter were both getting married, in June & end of July. I rarely wear makeup, but I wanted to look a little nicer for the weddings, but I didn't want sweat pouring down my face & my hair looking like a wet rat. My neurologist suggested Botox or a drug call Robinul. I did some research on both. I wasn't that enthused about the Robinul, but I called my dermatologist & asked about the Botox. He said that he could give me injections around the hairline & stop or decrease the perspiration from there for several months. Well, I went

ahead & did it (It cost $500 for the forehead area & one side of the nape of my neck; he said that area was harder to get & try the one side first. If it worked I could come back and do the other side.) The forehead shots worked great! My hair & makeup stayed nice and it lasted for about 4 months. The neckline shots didn't do anything, but I was more concerned with my face. Now in San for my daughter's wedding the end of July (outside, no less!), I took a dose of the Robinul also, for insurance. Never again. I got so dry that I think I could have had a heat stroke if I hadn't been able to go into the house with AC. I didn't perspire at all for several hours. I had cold towels & ice packs all over me for a couple of hours until I felt better. I did take two pills; I was supposed to take 1 or 2 & should have tried one first to see how I reacted. So if you ever try Robinul, be

sure to try the lowest dose first. Anyway, I was very happy with the results of the Botox & since the injections were up at the hairline, no worry about accidentally paralyzing my eye or something. I wouldn't spend the money for it again unless I had something really special like the weddings. I use cool bands--like folded bandanas with little beads inside. You soak it in water for a few minutes until it puffs up, then blot it dry & put it around your neck, wherever. As it warms up, just turn it over. It will stay cool for several hours & you can re-use it. I buy mine at Walmart in the sporting goods department. I also carry little battery-powered fans everywhere. I get them at Walmart for a dollar; at the end of summer they'll mark them down to $.50 or even a quarter. Then I buy a bunch of them. They take 2 AA batteries & come with

batteries. So they are really a bargain. I've tried the ones that have a water bottle attached & mist you, but I didn't like it. I have gotten so hot (just my face, mostly) that I tied a bra onto my head with ice packs inside to cool my face. There used to be a picture of that in the Photos section, but I think I took it off awhile back. I also carry instant ice packs (the kind you crush to activate) when I'm going somewhere that might be hot, like on a plane. If we have to just sit on the runway for awhile, the air cond. doesn't work & it gets so stifling I can't stand it unless I have my little fan, and the ice pack really helps too. I haven't flown since all the new restrictions, so I'm not sure if the ice packs would be a problem; they aren't a liquid or really a gel. Anyway, I go prepared, everywhere! Hope this helps a little. It's taken me 3 days to complete this

post. I'm trying to get back on a regular basis, but several issues are making it hard. I'm glad you are here. It's a little late, but welcome to you and all the other new members! Ramblin' Rose Moderator From: Shauna Glaspie <sglaspie2000 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To:

Neurosarcoidosis Subject: Re: hot flashes and and sarcDate: Mon, 18 Dec 2006 15:58:06 -0800 (PST) Hi Becky and sarcid group, I was just responding to the temperature changes. I too have hot flashes. I don't know if it is the prednisone or part of the sarcoid. I think maybe it is sarcoids because the body can regulate temperature normally. I think I read this somewhere. It changes all of a sudden and I am dripping sweat all over. I don't know for sure what it is though. Also I do have memory problems. For a period of time I couldn't remember where my bathroom was or other places that I had been too I thought were new. I remebered people but some things I could not recall. It has gotten better with prednisone although sometimes I do have to write things down because I will forget them in minutes and will not recall them until much later. Lately I have been trying to reduce my prednisone from 10 mg to five but find I need a nap during the day. Does this seem normal? I have notice this change since I tapered down a bit. Anyway hope all of you are doing ok. And once again I am glad to have you all here to talk to about this. Take care, Shauna in atlanta __________________________________________________

[Guest guest]

Becky,

Have you had seizures with this? Or do you have restless leg syndrome (a misnomer since it can be any extremity.)

Tracie

[Guest guest]

Becky,

I totally understand the vulnerability of having to change, or add a new MD.

I'm going to have to be seeing an Endocrinologist myself, and I'm not looking forward to doing the dance once again. I do know that I have alot of endo involvement tho- so I will follow thru.

Do take care,

Tracie

[Guest guest]

Thanks Tracie. Good luck with your new doctor. My endo involvement is hypothyroidism for about 17 yrs, diabetes (since steroids), empty sella, and who knows what else. It's hard to go through the process again and then realize you are sitting in front of someone who knows little about sarcoid. With my PCP I could always count on him to understand me. He will be starting up again with a new practice and I hope that will be in January. If he takes longer than that then yikes.Blessings,Beckytiodaat@... wrote: Becky, I totally understand the vulnerability of having to change, or add a new MD. I'm going to have to be seeing an Endocrinologist myself, and I'm not looking forward to doing the dance once again. I do know that I have alot of endo involvement tho- so I will follow thru. Do take care, Tracie __________________________________________________