Re: don't get it, caution whining

[Guest guest]

 

hi Marla, sorry to hear you're suffering!  the things you describe in your email resemble some things i've gone thru with this disease.  getting winded like that is a fact of life for me - going downstairs with a load of laundry always includes me standing there  & catching my breath before actually putting the clothes in the machine, and coming back upstairs always ends with me catching my breath in the kitchen before moving on.  i have to say that i don't ever recall it making me nauseous, but i can easily break into a sweat, especially if i'm taking prednisone at the time. just a little exertion, and my breathing gets fast, and my heart rate gets high pretty quickly.

 

in my case this is usually an indication that there's some swelling in my lungs.  do you already have sarcoid in your lungs?  if these are new symptoms for you, then i'd say give your doctor a call, but you're probably already thinking that.  these symptoms also get worse for me if i'm not getting good sleep... which can also be a result of breathing issues.

 

sorry i can't really offer much help, i don't have any experience with Remicade to draw from yet.  but when those symptoms get worse for me, there's usually a pulmonary function test or an EKG in my future.

 

sure hope you feel better soon

 

chris

I'm having some real strange and new to me symptoms (I think new).  The slightest excretion makes me weak and break out in a sweat,  loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the   family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up).

then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of " crap " .  My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family.

OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really????  My head feels fuzzy at times, and I just can't think.  my legs feel really weak, and get heavy with very much walking.  

I'm even afraid to say this, but I wonder if the Remicade is not working anymore?   My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne.   I find myself sitting around more and more,  I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early.  The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now.

Sorry to go on, and just not sure what is going on,  I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do.

What is your expert opinion????  Thanks much, 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  

[Guest guest]

Jackie, Thank you, I know I shouldn't be whining when so many can't even do what I can, it's just harder some days, more then others again, I know you all know that.  guess I better listen to myself when I say whine less, lol.  

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  

 

Marla

I am sorry you are feeling this way.  It is like that for me all the time.  I just had to learn I am not able to do what I used to do.  So I go slow, take naps and take help whenever it is offered.   I hope it gets better for you.  You have my prayers.

Jackie

 

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

don't get it, caution whining

 

I'm having some real strange and new to me symptoms (I think new).  The slightest excretion makes me weak and break out in a sweat,  loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the   family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up). then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of " crap " .  My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family. OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really????  My head feels fuzzy at times, and I just can't think.  my legs feel really weak, and get heavy with very much walking.   I'm even afraid to say this, but I wonder if the Remicade is not working anymore?   My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne.   I find myself sitting around more and more,  I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early.  The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now. Sorry to go on, and just not sure what is going on,  I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do. What is your expert opinion????  Thanks much, 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  

[Guest guest]

Thanks, I do have it in the lungs it started there, but it's worse in the neuro system, I have a lot more trouble walking then breathing, but some days both, and like you, I'm worse when I don't get a good nights sleep and that happened last night, so hopefully tonight will be better.

I sometimes have trouble staying a sleep.  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  

 

 

hi Marla, sorry to hear you're suffering!  the things you describe in your email resemble some things i've gone thru with this disease.  getting winded like that is a fact of life for me - going downstairs with a load of laundry always includes me standing there  & catching my breath before actually putting the clothes in the machine, and coming back upstairs always ends with me catching my breath in the kitchen before moving on.  i have to say that i don't ever recall it making me nauseous, but i can easily break into a sweat, especially if i'm taking prednisone at the time. just a little exertion, and my breathing gets fast, and my heart rate gets high pretty quickly.

 

in my case this is usually an indication that there's some swelling in my lungs.  do you already have sarcoid in your lungs?  if these are new symptoms for you, then i'd say give your doctor a call, but you're probably already thinking that.  these symptoms also get worse for me if i'm not getting good sleep... which can also be a result of breathing issues.

 

sorry i can't really offer much help, i don't have any experience with Remicade to draw from yet.  but when those symptoms get worse for me, there's usually a pulmonary function test or an EKG in my future.

 

sure hope you feel better soon

 

chris

I'm having some real strange and new to me symptoms (I think new).  The slightest excretion makes me weak and break out in a sweat,  loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the   family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up).

then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of " crap " .  My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family.

OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really????  My head feels fuzzy at times, and I just can't think.  my legs feel really weak, and get heavy with very much walking.  

I'm even afraid to say this, but I wonder if the Remicade is not working anymore?   My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne.   I find myself sitting around more and more,  I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early.  The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now.

Sorry to go on, and just not sure what is going on,  I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do.

What is your expert opinion????  Thanks much, 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  

[Guest guest]

we all whine at one time or another. Who else has the right.

keep on keeping on. I got big shoulders.

Jackie

don't get it, caution whining

I'm having some real strange and new to me symptoms (I think new). The slightest excretion makes me weak and break out in a sweat, loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up). then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of "crap". My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family. OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really???? My head feels fuzzy at times, and I just can't think. my legs feel really weak, and get heavy with very much walking. I'm even afraid to say this, but I wonder if the Remicade is not working anymore? My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne. I find myself sitting around more and more, I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early. The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now. Sorry to go on, and just not sure what is going on, I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do. What is your expert opinion???? Thanks much, 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

[Guest guest]

Marla, how long have you felt like this? Sometimes I'll get the funks & not be

able to do ANYthing; then after awhile--couple of weeks, maybe a month or

two--it gets better, back to my usual not-so-good state. I'm not sure if we

have the same situation--i get hot & sweaty just thinking about exertion. I've

had trouble do stuff like vacuuming,etc., fot years, but it's gotten worse since

the back problems. Hopefully for you this is a temporary setback. Maybe you need

your med combo tinkered with, rather than the Remicade alone. Hoping for the

best for you, Marla.

Re: don't get it, caution whining

Marla

I am sorry you are feeling this way. It is like that for me all the time. I

just had to learn I am not able to do what I used to do. So I go slow, take

naps and take help whenever it is offered. I hope it gets better for you. You

have my prayers.

Jackie

Today I broke my Personal Record;;;;;;;;

I am STILL ALIVE............

don't get it, caution whining

I'm having some real strange and new to me symptoms (I think new).

The slightest excretion makes me weak and break out in a sweat, loading the

washer, how easy is that, and it feels like I cleaned the house, in fact

yesterday, I vacuumed the family room and kitchen and had to lie down for over

an hour and felt like I was going to get sick (throw up).

then the hot sweats turn to cold sweats, I feel so weak, I have to start

cleaning, like getting rid of " crap " . My family at least some of them are

coming out in Aug for my Mother's 90th birthday and I have one room where we

just throw things, and need to clean it out and use it as a bedroom for guests,

they won't all be staying with me, but still, this will be the first time coming

to my house for some of my family.

OK so I got a box and dumped all t he peanut like stuff out of it, and had to

sit down, now really????

My head feels fuzzy at times, and I just can't think. my legs feel really

weak, and get heavy with very much walking.

I'm even afraid to say this, but I wonder if the Remicade is not working

anymore? My face lesions are going crazy, I feel worse then when I was 16, as

I never had bad acne. I find myself sitting around more and more, I signed up

for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10

is just too early. The one I'm doing at night at 6pm, I've only missed 2 in 12

weeks, I do feel better in the evening, but not the usual get up and go, I use

to get so much done in the evening, not so much now.

Sorry to go on, and just not sure what is going on, I do exercise my upper

body, but 10 mins is like forever when I'm done, I break a sweat, and feel so

tired, can't do as much with the legs anymore, can't lift any weights with them,

and the treadmill is getting more difficult to do.

What is your expert opinion????

Thanks much,

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

[Guest guest]

Thanks Jackie. 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  

 

we all whine at one time or another.  Who else has the right. 

keep on keeping on.  I got big shoulders.

Jackie

 

don't get it, caution whining

 

I'm having some real strange and new to me symptoms (I think new).  The slightest excretion makes me weak and break out in a sweat,  loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the   family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up). then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of " crap " .  My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family. OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really????  My head feels fuzzy at times, and I just can't think.  my legs feel really weak, and get heavy with very much walking.   I'm even afraid to say this, but I wonder if the Remicade is not working anymore?   My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne.   I find myself sitting around more and more,  I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early.  The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now. Sorry to go on, and just not sure what is going on,  I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do. What is your expert opinion????  Thanks much, 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  

[Guest guest]

Marla,Unfortunately, what you are describing is the main aspect (that and pain all over) that has never resolved in my NS. I, too, have difficulty doing more than one thing at a time without resting, and I have days when the hot/cold sweating gets so bad that I am sure I have a virus, but on the next day I am feeling much better. The doc put me on ritalin, which helped a lot, but I got so jittery on it that I only take it now when I have an appointment or a family get-together. As far as the profuse sweating, I just carry a lot of tissues when I go out, because I never know when the old spout is going to go off -- especially my head. I'm about to cut off all of my hair (I'm trying to grow it out) as it is making me way too

hot.Sorry I couldn't be more encouraging. Maybe the ritalin would help you some.Take care and I hope you feel better.To: NS <neurosarcoidosis >Sent: Tue, April 26, 2011 1:12:44 PMSubject: don't get it, caution whining

I'm having some real strange and new to me symptoms (I think new). The slightest excretion makes me weak and break out in a sweat, loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up).

then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of "crap". My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family.

OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really???? My head feels fuzzy at times, and I just can't think. my legs feel really weak, and get heavy with very much walking.

I'm even afraid to say this, but I wonder if the Remicade is not working anymore? My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne. I find myself sitting around more and more, I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early. The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now.

Sorry to go on, and just not sure what is going on, I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do.

What is your expert opinion???? Thanks much, 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

[Guest guest]

Thanks . 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  

 

Marla,Unfortunately, what you are describing is the main aspect (that and pain all over) that has never resolved in my NS.  I, too, have difficulty doing more than one thing at a time without resting, and I have days when the hot/cold sweating gets so bad that I am sure I have a virus, but on the next day I am feeling much better.  The doc put me on ritalin, which helped a lot, but I got so jittery on it that I only take it now when I have an appointment or a family get-together.  As far as the profuse sweating, I just carry a lot of tissues when I go out, because I never know when the old spout is going to go off -- especially my head.  I'm about to cut off all of my hair (I'm trying to grow it out) as it is making me way too

hot.Sorry I couldn't be more encouraging. Maybe the ritalin would help you some.Take care and I hope you feel better.

To: NS <neurosarcoidosis >Sent: Tue, April 26, 2011 1:12:44 PM

Subject: don't get it, caution whining

 

I'm having some real strange and new to me symptoms (I think new).  The slightest excretion makes me weak and break out in a sweat,  loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the   family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up).

then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of " crap " .  My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family.

OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really????  My head feels fuzzy at times, and I just can't think.  my legs feel really weak, and get heavy with very much walking.  

I'm even afraid to say this, but I wonder if the Remicade is not working anymore?   My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne.   I find myself sitting around more and more,  I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early.  The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now.

Sorry to go on, and just not sure what is going on,  I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do.

What is your expert opinion????  Thanks much, 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  

[Guest guest]

Marla,

It is funny that you mention the sweating thing, because I was starting to do the sweating thing and I was thinking that it was because my body was finally trying to get back to normal from the decreasing of the prednisone. I haven't done a lot of sweating on the high dose of prednisone even when I exercise and thought it was just the medicine messing with me.

I just wonder how you know the difference between the side effects of the medicines and the symptoms of the disease?? either way they are both bad.

thanks

To: Neurosarcoidosis Sent: Thu, April 28, 2011 1:40:39 PMSubject: Re: don't get it, caution whining

Marla,

Unfortunately, what you are describing is the main aspect (that and pain all over) that has never resolved in my NS. I, too, have difficulty doing more than one thing at a time without resting, and I have days when the hot/cold sweating gets so bad that I am sure I have a virus, but on the next day I am feeling much better. The doc put me on ritalin, which helped a lot, but I got so jittery on it that I only take it now when I have an appointment or a family get-together. As far as the profuse sweating, I just carry a lot of tissues when I go out, because I never know when the old spout is going to go off -- especially my head. I'm about to cut off all of my hair (I'm trying to grow it out) as it is making me way too hot.

Sorry I couldn't be more encouraging. Maybe the ritalin would help you some.

Take care and I hope you feel better.

To: NS <neurosarcoidosis >Sent: Tue, April 26, 2011 1:12:44 PMSubject: don't get it, caution whining

I'm having some real strange and new to me symptoms (I think new). The slightest excretion makes me weak and break out in a sweat, loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up). then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of "crap". My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family. OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really???? My head feels fuzzy at times, and I just

can't think. my legs feel really weak, and get heavy with very much walking. I'm even afraid to say this, but I wonder if the Remicade is not working anymore? My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne. I find myself sitting around more and more, I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early. The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now. Sorry to go on, and just not sure what is going on, I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do. What is your

expert opinion???? Thanks much, 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

[Guest guest]

Thanks , I'm not on Pred. but do notice that the hot and cold is worse when I'm tired, after riding in a car all day yesterday, I went to my Bible study class, and was hot and cold the whole night, and felt like I was getting sick, I was just too tired. today, I still feel it, so lying low and resting, and it will get 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  

 

Marla,

It is funny that you mention the sweating thing, because I was starting to do the sweating thing and I was thinking that it was because my body was finally trying to get back to normal from the decreasing of the prednisone.    I haven't done a lot of sweating on the high dose of prednisone even when I exercise and thought it was just the medicine messing with me.

 

I just wonder how you know the difference between the side effects of the medicines and the symptoms of the disease??  either way they are both bad.

thanks

To: Neurosarcoidosis

Sent: Thu, April 28, 2011 1:40:39 PMSubject: Re: don't get it, caution whining

 

Marla,

Unfortunately, what you are describing is the main aspect (that and pain all over) that has never resolved in my NS.  I, too, have difficulty doing more than one thing at a time without resting, and I have days when the hot/cold sweating gets so bad that I am sure I have a virus, but on the next day I am feeling much better.  The doc put me on ritalin, which helped a lot, but I got so jittery on it that I only take it now when I have an appointment or a family get-together.  As far as the profuse sweating, I just carry a lot of tissues when I go out, because I never know when the old spout is going to go off -- especially my head.  I'm about to cut off all of my hair (I'm trying to grow it out) as it is making me way too hot.

Sorry I couldn't be more encouraging. Maybe the ritalin would help you some.

Take care and I hope you feel better.

To: NS <neurosarcoidosis >

Sent: Tue, April 26, 2011 1:12:44 PMSubject: don't get it, caution whining 

I'm having some real strange and new to me symptoms (I think new).  The slightest excretion makes me weak and break out in a sweat,  loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the   family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up).

then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of " crap " .  My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family.

OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really????  My head feels fuzzy at times, and I just

can't think.  my legs feel really weak, and get heavy with very much walking.   I'm even afraid to say this, but I wonder if the Remicade is not working anymore?   My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne.   I find myself sitting around more and more,  I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early.  The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now.

Sorry to go on, and just not sure what is going on,  I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do.

What is your

expert opinion????  Thanks much, 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  

[Guest guest]

Marla, the cold sweat, nausea, fatigue, problems with exertion really bother me. Do you have any chest pain, jaw pain, or shoulder pain. Just to be safe I wish maybe you would consider talking to your PCP about a cardiologist. I can never remember who the other cardiac sarcs are, my memory isn't that good. I am, and I think is too?

To: NS <neurosarcoidosis >Sent: Tue, April 26, 2011 1:12:44 PMSubject: don't get it, caution whining

I'm having some real strange and new to me symptoms (I think new). The slightest excretion makes me weak and break out in a sweat, loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up). then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of "crap". My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family. OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really???? My head feels fuzzy at times, and I just

can't think. my legs feel really weak, and get heavy with very much walking. I'm even afraid to say this, but I wonder if the Remicade is not working anymore? My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne. I find myself sitting around more and more, I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early. The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now. Sorry to go on, and just not sure what is going on, I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do. What is your

expert opinion???? Thanks much, 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

[Guest guest]

Marla, it's like someone told me. Even though a person has the utmost sympathy for someone else, the pain your having is still yours, and you are the one having to live through it. I gripe, then I fuss at myself too, but there have been many times I have mentioned something here, and someone had a good answer. take care

To: Neurosarcoidosis Sent: Tue, April 26, 2011 7:32:19 PMSubject: Re: don't get it, caution whining

Jackie, Thank you, I know I shouldn't be whining when so many can't even do what I can, it's just harder some days, more then others again, I know you all know that. guess I better listen to myself when I say whine less, lol. 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

Marla

I am sorry you are feeling this way. It is like that for me all the time. I just had to learn I am not able to do what I used to do. So I go slow, take naps and take help whenever it is offered. I hope it gets better for you. You have my prayers.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

don't get it, caution whining

I'm having some real strange and new to me symptoms (I think new). The slightest excretion makes me weak and break out in a sweat, loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up). then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of "crap". My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family. OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really???? My head feels fuzzy at times, and I just

can't think. my legs feel really weak, and get heavy with very much walking. I'm even afraid to say this, but I wonder if the Remicade is not working anymore? My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne. I find myself sitting around more and more, I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early. The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now. Sorry to go on, and just not sure what is going on, I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do. What is your

expert opinion???? Thanks much, 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

[Guest guest]

I agree with Connie. i went to my cardiologist basically to get clearance for

back surgery. I told him that for several months I'd been more tired & got

winded more easily, but I thought it was from the weight I've gsined this past

year. Lo and behold, my ECG & echo were both abnormal; now I'm getting an MRI of

my heart next week because he's worried that the sarc may be in my heart. I

think your symptoms warrant a check. Try to see a cardiologist with experience

in cardiac sarc.

don't get it, caution whining

 

I'm having some real strange and new to me symptoms (I think new). 

The slightest excretion makes me weak and break out in a sweat,  loading the

washer, how easy is that, and it feels like I cleaned the house, in fact

yesterday, I vacuumed the   family room and kitchen and had to lie down for over

an hour and felt like I was going to get sick (throw up).

then the hot sweats turn to cold sweats, I feel so weak, I have to start

cleaning, like gettin

[Guest guest]

Amen to that, Connie! To paraphrase, when mama ain't healthy, ain't nobody

healthy.

Re: don't get it, caution whining

 

Jackie,

Thank you, I know I shouldn't be whining when so many can't even do what I can,

it's just harder some days, more then others again, I know you all know that. 

guess I better listen to myself when I say whine less, lol.  

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  

On Tue, Apr 26, 2011 at 1:10 PM, jackie wro

[Guest guest]

Connie, I've been checked out for cardiac sarc, and so far No, you can't go on Remicade if you have cardiac sarc. that's why had to go off it. I just believe it's the sarc in general that makes me feel so sick. 

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  

 

Marla, the cold sweat, nausea, fatigue, problems with exertion really bother me.  Do you have any chest pain, jaw pain, or shoulder pain.  Just to be safe I wish maybe you would consider talking to your PCP about a cardiologist.  I can never remember who the other cardiac sarcs are, my memory isn't that good.  I am, and I think is too? 

To: NS <neurosarcoidosis >

Sent: Tue, April 26, 2011 1:12:44 PMSubject: don't get it, caution whining 

I'm having some real strange and new to me symptoms (I think new).  The slightest excretion makes me weak and break out in a sweat,  loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the   family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up).

then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of " crap " .  My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family.

OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really????  My head feels fuzzy at times, and I just

can't think.  my legs feel really weak, and get heavy with very much walking.   I'm even afraid to say this, but I wonder if the Remicade is not working anymore?   My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne.   I find myself sitting around more and more,  I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early.  The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now.

Sorry to go on, and just not sure what is going on,  I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do.

What is your

expert opinion????  Thanks much, 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  

[Guest guest]

I didn't realize that you couldn't take Remicade if you have cardiac sarc. Do you know why? I'm just trying to get a jump on my options if my heart MRI isn't okay.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sat, 7 May 2011 11:58:30 -0600Subject: Re: don't get it, caution whining

Connie, I've been checked out for cardiac sarc, and so far No, you can't go on Remicade if you have cardiac sarc. that's why had to go off it. I just believe it's the sarc in general that makes me feel so sick. 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

Marla, the cold sweat, nausea, fatigue, problems with exertion really bother me. Do you have any chest pain, jaw pain, or shoulder pain. Just to be safe I wish maybe you would consider talking to your PCP about a cardiologist. I can never remember who the other cardiac sarcs are, my memory isn't that good. I am, and I think is too?

To: NS <neurosarcoidosis >Sent: Tue, April 26, 2011 1:12:44 PMSubject: don't get it, caution whining

I'm having some real strange and new to me symptoms (I think new). The slightest excretion makes me weak and break out in a sweat, loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up). then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of "crap". My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family. OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really???? My head feels fuzzy at times, and I just can't think. my legs feel really weak, and get heavy with very much walking. I'm even afraid to say this, but I wonder if the Remicade is not working anymore? My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne. I find myself sitting around more and more, I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early. The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now. Sorry to go on, and just not sure what is going on, I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do. What is your expert opinion???? Thanks much, 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

[Guest guest]

Here I am again behind, You know I don't remember why you can't, I just know I had to have a normal echocardiogram before I could take Remicade, and Tracie had to go off when she got it in her heart, you might ask her, I wish I could remember, it drives me crazy, it's been really bad lately, and I'm getting tired of hearing that we're all getting to that age, I'm only 53, give me a break, it shouldn't be this bad, this early.  and when I told my doctor at my appt last week that I would occasionally have to take an extra Lorazapam for sleep, and we figured out that 10mgs, he got a little nervous, and said I need to get off it, as least take a break, or I will just need more and more. So he put me on Valium 5mgs, and told me to go down to 4mgs of Lorazapam, so I haven't been sleeping well for days, finally called him and told him I couldn't take it anymore, tired and started hurting, so he bumped me up to 6mgs of the Lorazapam with the Valium, and I think I slept better last night, but still feeling tired and hurt, but also we have rain and it's in the 40's, that is cold rain, and it gets deep into the bones. 

oops sorry, just went off again,  but have one more thing to vent about, I called to have Remicade sent to my doctor for my appt next wed.  and was told I need pre-approval again, I hope they don't screw up my appt again.  Oh my, I'm getting tired just repeating this!  

Thanks for listening.  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  

 

I didn't realize that you couldn't take Remicade if you have cardiac sarc.  Do you know why?  I'm just trying to get a jump on my options if my heart MRI isn't okay.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: mebramer@...Date: Sat, 7 May 2011 11:58:30 -0600

Subject: Re: don't get it, caution whining

Connie, I've been checked out for cardiac sarc, and so far No, you can't go on Remicade if you have cardiac sarc. that's why had to go off it. I just believe it's the sarc in general that makes me feel so sick. 

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  

 

Marla, the cold sweat, nausea, fatigue, problems with exertion really bother me.  Do you have any chest pain, jaw pain, or shoulder pain.  Just to be safe I wish maybe you would consider talking to your PCP about a cardiologist.  I can never remember who the other cardiac sarcs are, my memory isn't that good.  I am, and I think is too? 

To: NS <neurosarcoidosis >

Sent: Tue, April 26, 2011 1:12:44 PMSubject: don't get it, caution whining 

I'm having some real strange and new to me symptoms (I think new).  The slightest excretion makes me weak and break out in a sweat,  loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the   family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up).

then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of " crap " .  My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family.

OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really????  My head feels fuzzy at times, and I just can't think.  my legs feel really weak, and get heavy with very much walking.  

I'm even afraid to say this, but I wonder if the Remicade is not working anymore?   My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne.   I find myself sitting around more and more,  I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early.  The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now.

Sorry to go on, and just not sure what is going on,  I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do.

What is your expert opinion????  Thanks much, 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  

[Guest guest]

Marla, you know there's justifiable ranting or vining ('s wonderful combo

of venting & whining). You just keep takin' the hits & back up un your feet to

go on. Nothing wrong with stopping & having a little fit once in awhile; if

nothing else you might get a country song out of it. Any of you remember the

song I wrote a couple of years ago after having a meltdown on that Texas trip

with Ginny. That song probably kept me out of jail. Marla, re: sleep meds, have

you ever taken Rozerem? It's supposed to work more naturally, with your body's

seratonin. There is less chance of getting sleep cycles messed up & I think it's

pretty hard to develop tolerance or addiction. My psych doc had me try it a year

or so back, and I really liked it. It didn't depress my dream sleep or leave me

slushy (?) the next day. Only problem is cost. Once I hit the drug coverage gap,

he gave me some samples, but when those ran out I went back to Ambien. It's

cheap & works so-so.

* don't get it, caution whining

>

>

> I'm having some real strange and new to me symptoms (I think new).

> The slightest excretion makes me weak and break out in a sweat, loading

> the washer, how easy is that, and it feels like I cleaned the house, in fact

> yesterday, I vacuumed the family room and kitchen and had to lie down for

> over an hour and felt like I was going to get sick (throw up).

> then the hot sweats turn to cold sweats, I feel so weak, I have to start

> cleaning, like getting rid of " crap " . My family at least some of them are

> coming out in Aug for my Mother's 90th birthday and I have one room where we

> just throw things, and need to clean it out and use it as a bedroom for

> guests, they won't all be staying with me, but still, this will be the first

> time coming to my house for some of my family.

> OK so I got a box and dumped all t he peanut like stuff out of it, and had

> to sit down, now really????

> My head feels fuzzy at times, and I just can't think. my legs feel really

> weak, and get heavy with very much walking.

> I'm even afraid to say this, but I wonder if the Remicade is not working

> anymore? My face lesions are going crazy, I feel worse then when I was 16,

> as I never had bad acne. I find myself sitting around more and more, I

> signed up for a Bible study on tues at 10 am, and only made it once in 4

> weeks, decided 10 is just too early. The one I'm doing at night at 6pm,

> I've only missed 2 in 12 weeks, I do feel better in the evening, but not the

> usual get up and go, I use to get so much done in the evening, not so much

> now.

> Sorry to go on, and just not sure what is going on, I do exercise my upper

> body, but 10 mins is like forever when I'm done, I break a sweat, and feel

> so tired, can't do as much with the legs anymore, can't lift any weights

> with them, and the treadmill is getting more difficult to do.

> What is your expert opinion????

>

> Thanks much,

>

> 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* *

>

>

>

>

>

>

>

>

>

[Guest guest]

I hope by the time you get this, everything with your medicine and rest is straightened out. Lack of sleep is torture, not to mention coupling it without everything else. Hope your feeling better soon

To: Neurosarcoidosis Sent: Thu, May 12, 2011 10:05:53 PMSubject: Re: don't get it, caution whining

Here I am again behind, You know I don't remember why you can't, I just know I had to have a normal echocardiogram before I could take Remicade, and Tracie had to go off when she got it in her heart, you might ask her, I wish I could remember, it drives me crazy, it's been really bad lately, and I'm getting tired of hearing that we're all getting to that age, I'm only 53, give me a break, it shouldn't be this bad, this early. and when I told my doctor at my appt last week that I would occasionally have to take an extra Lorazapam for sleep, and we figured out that 10mgs, he got a little nervous, and said I need to get off it, as least take a break, or I will just need more and more. So he put me on Valium 5mgs, and told me to go down to 4mgs of Lorazapam, so I haven't been sleeping well for days, finally called him and told him I couldn't take it anymore, tired and started hurting, so he bumped me up to 6mgs of the Lorazapam with the Valium, and

I think I slept better last night, but still feeling tired and hurt, but also we have rain and it's in the 40's, that is cold rain, and it gets deep into the bones. oops sorry, just went off again, but have one more thing to vent about, I called to have Remicade sent to my doctor for my appt next wed. and was told I need pre-approval again, I hope they don't screw up my appt again. Oh my, I'm getting tired just repeating this! Thanks for listening. 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

I didn't realize that you couldn't take Remicade if you have cardiac sarc. Do you know why? I'm just trying to get a jump on my options if my heart MRI isn't okay.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sat, 7 May 2011 11:58:30 -0600Subject: Re: don't get it, caution whining Connie, I've been checked out for cardiac sarc, and so far No, you can't go on Remicade if you have cardiac sarc. that's why had to go off it. I just believe it's the sarc in general that makes me feel so sick. 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

Marla, the cold sweat, nausea, fatigue, problems with exertion really bother me. Do you have any chest pain, jaw pain, or shoulder pain. Just to be safe I wish maybe you would consider talking to your PCP about a cardiologist. I can never remember who the other cardiac sarcs are, my memory isn't that good. I am, and I think is too?

To: NS <neurosarcoidosis >Sent: Tue, April 26, 2011 1:12:44 PMSubject: don't get it, caution whining I'm having some real strange and new to me symptoms (I think new). The slightest excretion makes me weak and break out in a sweat, loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up). then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of "crap". My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family. OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really???? My head feels fuzzy at times, and I just

can't think. my legs feel really weak, and get heavy with very much walking. I'm even afraid to say this, but I wonder if the Remicade is not working anymore? My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne. I find myself sitting around more and more, I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early. The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now. Sorry to go on, and just not sure what is going on, I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do. What is your

expert opinion???? Thanks much, 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

[Guest guest]

Thanks Connie, but I have to say that I'm behind again, now fighting Bronchitis, I'm really getting tired of all this stuff, what little energy I have is spent on trying to clean out this house after the winter, when we just throw things in the corner, and say some day, well it's here. But I still don't have the energy to do 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  

 

I hope by the time you get this, everything with your medicine and rest is straightened out.  Lack of sleep is torture, not to mention coupling it without everything else.  Hope your feeling better soon

To: Neurosarcoidosis

Sent: Thu, May 12, 2011 10:05:53 PMSubject: Re: don't get it, caution whining 

Here I am again behind, You know I don't remember why you can't, I just know I had to have a normal echocardiogram before I could take Remicade, and Tracie had to go off when she got it in her heart, you might ask her, I wish I could remember, it drives me crazy, it's been really bad lately, and I'm getting tired of hearing that we're all getting to that age, I'm only 53, give me a break, it shouldn't be this bad, this early.  and when I told my doctor at my appt last week that I would occasionally have to take an extra Lorazapam for sleep, and we figured out that 10mgs, he got a little nervous, and said I need to get off it, as least take a break, or I will just need more and more. So he put me on Valium 5mgs, and told me to go down to 4mgs of Lorazapam, so I haven't been sleeping well for days, finally called him and told him I couldn't take it anymore, tired and started hurting, so he bumped me up to 6mgs of the Lorazapam with the Valium, and

I think I slept better last night, but still feeling tired and hurt, but also we have rain and it's in the 40's, that is cold rain, and it gets deep into the bones.  oops sorry, just went off again,  but have one more thing to vent about, I called to have Remicade sent to my doctor for my appt next wed.  and was told I need pre-approval again, I hope they don't screw up my appt again.  Oh my, I'm getting tired just repeating this!  

Thanks for listening.  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  

 

I didn't realize that you couldn't take Remicade if you have cardiac sarc.  Do you know why?  I'm just trying to get a jump on my options if my heart MRI isn't okay.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: mebramer@...

Date: Sat, 7 May 2011 11:58:30 -0600Subject: Re: don't get it, caution whining Connie, I've been checked out for cardiac sarc, and so far No, you can't go on Remicade if you have cardiac sarc. that's why had to go off it. I just believe it's the sarc in general that makes me feel so sick. 

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  

 

Marla, the cold sweat, nausea, fatigue, problems with exertion really bother me.  Do you have any chest pain, jaw pain, or shoulder pain.  Just to be safe I wish maybe you would consider talking to your PCP about a cardiologist.  I can never remember who the other cardiac sarcs are, my memory isn't that good.  I am, and I think is too? 

To: NS <neurosarcoidosis >

Sent: Tue, April 26, 2011 1:12:44 PMSubject: don't get it, caution whining  I'm having some real strange and new to me symptoms (I think new).  The slightest excretion makes me weak and break out in a sweat,  loading the washer, how easy is that, and it feels like I cleaned the house, in fact yesterday, I vacuumed the   family room and kitchen and had to lie down for over an hour and felt like I was going to get sick (throw up).

then the hot sweats turn to cold sweats, I feel so weak, I have to start cleaning, like getting rid of " crap " .  My family at least some of them are coming out in Aug for my Mother's 90th birthday and I have one room where we just throw things, and need to clean it out and use it as a bedroom for guests, they won't all be staying with me, but still, this will be the first time coming to my house for some of my family.

OK so I got a box and dumped all t he peanut like stuff out of it, and had to sit down, now really????  My head feels fuzzy at times, and I just

can't think.  my legs feel really weak, and get heavy with very much walking.   I'm even afraid to say this, but I wonder if the Remicade is not working anymore?   My face lesions are going crazy, I feel worse then when I was 16, as I never had bad acne.   I find myself sitting around more and more,  I signed up for a Bible study on tues at 10 am, and only made it once in 4 weeks, decided 10 is just too early.  The one I'm doing at night at 6pm, I've only missed 2 in 12 weeks, I do feel better in the evening, but not the usual get up and go, I use to get so much done in the evening, not so much now.

Sorry to go on, and just not sure what is going on,  I do exercise my upper body, but 10 mins is like forever when I'm done, I break a sweat, and feel so tired, can't do as much with the legs anymore, can't lift any weights with them, and the treadmill is getting more difficult to do.

What is your

expert opinion????  Thanks much, 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