Anyone else crazy like I am?

August 7, 2007

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!

August 7, 2007

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

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!

August 7, 2007

Hi ,The heat sure does bother me! When I was working I would look like I had gone for a swim. And that was before I was taking meds! Now, I will go from hot to cold (teeth chattering). Flushed face and neck, etc. My understanding of the sweats is that they can be an indicator of sarcoidosis disease activity. Burning,numbness, and pain I can relate to also. You're taking 500mg more than the recommended max dose of Cellcept...did you start out lower and then increased it over weeks? I'm curious b/c I take it too.Blessings,Beckyturtlesnap123 wrote: 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!

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Yahoo! Search.

August 7, 2007

Hi ,The heat sure does bother me! When I was working I would look like I had gone for a swim. And that was before I was taking meds! Now, I will go from hot to cold (teeth chattering). Flushed face and neck, etc. My understanding of the sweats is that they can be an indicator of sarcoidosis disease activity. Burning,numbness, and pain I can relate to also. You're taking 500mg more than the recommended max dose of Cellcept...did you start out lower and then increased it over weeks? I'm curious b/c I take it too.Blessings,Beckyturtlesnap123 wrote: 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!

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Yahoo! Search.

August 7, 2007

Hi Becky,I have actually been told that the max dose for Cellcept is 3 grams, so I am .5 grams under the max dose. I started right out with that amount. No working up to it, nothing. Just gung ho so to speak. I seem to have no hot/cold tolerance at all. When it is warm, I am really warm and cannot get cool...when it is cold, I am really cold and cannot get warm. It drives my boyfriend insane. I swore for a long time I had thyroid issues, but as usual with almost everything in this disease, it all comes back normal! ARGH!Mac Tosh wrote: Hi ,The heat sure does bother me! When I was working I would look like I had gone for a swim. And that was before I was taking meds! Now, I will go from hot to cold (teeth chattering). Flushed face and neck, etc. My understanding of the sweats is that they can be an indicator of sarcoidosis disease activity. Burning,numbness, and pain I can relate to also. You're taking 500mg more than the recommended max dose of Cellcept...did you start out lower and then increased it over weeks? I'm curious b/c I take it too.Blessings,Beckyturtlesnap123 <turtlesnap123 (AT) yahoo (DOT) com> wrote: 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! Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search.

Need a vacation? Get great deals to amazing places on Yahoo! Travel.

August 7, 2007

Hi Becky,I have actually been told that the max dose for Cellcept is 3 grams, so I am .5 grams under the max dose. I started right out with that amount. No working up to it, nothing. Just gung ho so to speak. I seem to have no hot/cold tolerance at all. When it is warm, I am really warm and cannot get cool...when it is cold, I am really cold and cannot get warm. It drives my boyfriend insane. I swore for a long time I had thyroid issues, but as usual with almost everything in this disease, it all comes back normal! ARGH!Mac Tosh wrote: Hi ,The heat sure does bother me! When I was working I would look like I had gone for a swim. And that was before I was taking meds! Now, I will go from hot to cold (teeth chattering). Flushed face and neck, etc. My understanding of the sweats is that they can be an indicator of sarcoidosis disease activity. Burning,numbness, and pain I can relate to also. You're taking 500mg more than the recommended max dose of Cellcept...did you start out lower and then increased it over weeks? I'm curious b/c I take it too.Blessings,Beckyturtlesnap123 <turtlesnap123 (AT) yahoo (DOT) com> wrote: 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! Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search.

Need a vacation? Get great deals to amazing places on Yahoo! Travel.

August 7, 2007

Hi Rose,Thanks for the response. My doctor is a board certified neurologist and neuro-opthamologist. He also has a PHD in psychiatry. Not that I need that! :)In my case no one can blame it on menopause...I am 31 years old! So thankfully I have not had that excuse thrown at me! Not yet anyway! My heat/cold tolerance is not good. In the summer I am always hot and in the winter always cold. It drives people crazy, and sometimes I question my own sanity (as I think most of us with this disease do). My doctor seems to think I have sarcoid AND multiple sclerosis...I buy the sarcoid for sure, no doubt there, but I cannot totally buy into the MS. I think 99% of my weird health stuff is the sarcoid. I just wish I had some relief! Even the 2.5 grams of Cellcept does not always cut it...especially this time of year...Do you have swelling as well?Thanks so

much!Rose wrote: 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!

Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out.

August 7, 2007

Hi Rose,Thanks for the response. My doctor is a board certified neurologist and neuro-opthamologist. He also has a PHD in psychiatry. Not that I need that! :)In my case no one can blame it on menopause...I am 31 years old! So thankfully I have not had that excuse thrown at me! Not yet anyway! My heat/cold tolerance is not good. In the summer I am always hot and in the winter always cold. It drives people crazy, and sometimes I question my own sanity (as I think most of us with this disease do). My doctor seems to think I have sarcoid AND multiple sclerosis...I buy the sarcoid for sure, no doubt there, but I cannot totally buy into the MS. I think 99% of my weird health stuff is the sarcoid. I just wish I had some relief! Even the 2.5 grams of Cellcept does not always cut it...especially this time of year...Do you have swelling as well?Thanks so

much!Rose wrote: 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!

Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out.

August 7, 2007

, I don't have the alternating hot/cold thing; I'm just always HOT! Before I had sarc, I was always cold. 40 degrees out & I'd have on a winter coat, hat, scarf & gloves. And usually a turtleneck & sweatshirt underneath! I've had to give away my turtlenecks & most of my sweatshirts & sweaters; just can't stand to wear them. The last couple of winters (Indiana) I've only worn a jacket a couple of times; I usually wear a light denim shirt or hoodie. Almost never a hat or scarf & seldom gloves, even when it's 15 out! The only part of me that can't take the cold is my feet, because of neuropathy. They have to be warm or the pain is a lot worse. That's only been the past 3 years though. I remember the winter before that, I was so hot one night that I took the trash out in the snow, barefoot! Two trips. Sometimes I will just go outside & stand in the cold to cool off. But got to have those tootsies warm now.

The only time I had any swelling was at the worst of the Pred Dread--my PCP thought I was going into congestive heart failure. I could hardly breathe, my heart rate was fast, I was so swollen, b/p up. But after starting a slow-acting diuretic, Aldactone, & starting to taper off the Pred, the swelling resolved & I've not had it return (knock on particle board). That was 4 years ago. I've lost 60# of the 90 I gained on Pred; still got that saggy, baggy middle.

Well, you probably got more than you expected, or wanted! That's why they call me . . . . .

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

See what you’re getting into…before you go there

August 7, 2007

, I don't have the alternating hot/cold thing; I'm just always HOT! Before I had sarc, I was always cold. 40 degrees out & I'd have on a winter coat, hat, scarf & gloves. And usually a turtleneck & sweatshirt underneath! I've had to give away my turtlenecks & most of my sweatshirts & sweaters; just can't stand to wear them. The last couple of winters (Indiana) I've only worn a jacket a couple of times; I usually wear a light denim shirt or hoodie. Almost never a hat or scarf & seldom gloves, even when it's 15 out! The only part of me that can't take the cold is my feet, because of neuropathy. They have to be warm or the pain is a lot worse. That's only been the past 3 years though. I remember the winter before that, I was so hot one night that I took the trash out in the snow, barefoot! Two trips. Sometimes I will just go outside & stand in the cold to cool off. But got to have those tootsies warm now.

The only time I had any swelling was at the worst of the Pred Dread--my PCP thought I was going into congestive heart failure. I could hardly breathe, my heart rate was fast, I was so swollen, b/p up. But after starting a slow-acting diuretic, Aldactone, & starting to taper off the Pred, the swelling resolved & I've not had it return (knock on particle board). That was 4 years ago. I've lost 60# of the 90 I gained on Pred; still got that saggy, baggy middle.

Well, you probably got more than you expected, or wanted! That's why they call me . . . . .

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

See what you’re getting into…before you go there

August 8, 2007

Yes, me..............I hardly ever wear a coat! Never have......

the most I will wear is a sweatshirt and I KNOW why they