Advice Needed

[Guest guest]

HEY TENACITY, NOW I KNOW WHERE YOU GET YOUR NAME FROM...

HOPE I'M NOT OUT OF LINE HERE, BUT WONDERED - WHAT SURGERY DID YOU

HAVE?

SO FAR, I'VE BEEN IN THE SAME BOAT. NO EFFECTIVE TREATMENT - WHICH

SEEMS TO FRUSTRATE THE DOCS MORE (BELIEVE IT OR NOT) THAN ME.

I CAN'T MATCH YOUR INPATIENT TIME - OR OTHER STATS, BUT BELIEVE IT OR

NOT, I AM RUNNING A CLOSE SECOND - AND MY NUMBERS ARE ALSO JUST SINCE

12/01 (3 HOSPITALIZATIONS, 32 OR SO DAYS INPATIENT, 2 MRI'S, 3 CT

SCANS, BLOOD TESTS OUT THE WAZOO... AND TREATMENTS WHICH IN ALL BUT

ONE CASE HAVE MADE ME WORSE.)

BELIEVE IT OR NOT, YOUR POSTING DOES BRING ME COMFORT. KNOWING THAT

I'M NOT ALONE. IN FACT, REMEMBER THOSE QUESTIONS I VAGUELY

REFERENCED? WELL... YOU ANSWERED AT LEAST ONE OF THEM HERE :-)

I'M USUALLY AROUND - SOME TIME OR OTHER - MOST DAYS.

VENT ALL YOU LIKE. I'VE CERTAINLY DONE MY SHARE.

OH... AND YOU'RE WELCOME FOR LISTENING :-)

PAUL - AKA PULA

[Guest guest]

Hi Deborah.

Isn't it amazing how those close to us seem to have a harder time

dealing with our disease than we do?

I have had trials from friends, family, and my Christian brethren.

To me, and perhaps this is too simplistic, but it all comes down to

control. We all (or most anyway) want to feel like we're in

control. That is what bugs my brethren so much - the prayers are not

being answered how they want them, so they feel powerless -

ineffective - or, best put - out of control of the situation.

We, who are in the situation, know we are out of control. We know we

have little control over what is going on. Yet we cope. My wife and

children are coping quite well now - often better than I - but my

brethren, friends and business associates continue to perplex me. If

I can accept this, and yes - even accept it as God's will - then why

can't they? The only answer I can come up with is that they still

want to feel like they've got some control.

I fully understand about your view on the docs and all. So does my

internist. I took a " sabbatical " from her, and all other docs,

hospitals, tests... I did finally go back to her, and am due to see

her again on Tuesday. She is wonderful. She cares, and she will go

through this battle with me.

Anyway, have no idea if any of these words helped, but at least I

tried.

Again, I want to thank you. I am frustrated by your postings, but I

imagine not nearly as much as you. I too would think that after 6

neuros had said you had MSA, they'd leave well-enough alone. Even

there though, I would imagine there is a measure of that " control "

issue - among the docs. I've found it just as hard for them to admit

that they don't know how to help (though I've certainly had a lion's

share of them tell me that - something along the lines of " well -

there's something wrong, but I'm not sure what. " and... " (my area of

specialty) is not THE problem " - and then they send me off to another

doc.)

Actually, in my case, I've been blessed. My internist is accepting

of diagnoses and while she encourages me to do as much as I'm

comfortable with - she doesn't press (unless she perceives I'm

endangering my life - but even there, I think she's taken a chill

pill, when she insisted I go in the hospital, only to see me come out

worse than when I went in).

Here for you.

[Guest guest]

Thank you Winifred,

I do have a type 2 chiari malformation of 4 mm but it has been established

by 7 neuro's that this is not the cause of my problems. I went for over 2

years doctor shopping and trying everything, including a STN DBS, to prove

that this was just Parkinson's disease or something simple to explain...

like the chiari...instead of the terminal disease MSA.

Next month marks my 3 year anniversary since being dx with PD. I have

come to the point of acceptance. My body and my fight has brought me to

where I am. I do accept this diagnosis and know that after so many tests

and so many specialists that say the same thing....as well as watching my

body and the symptoms that I experience... that this is MSA. I just need to

help my husband see that we have done all that can be done to rule out

anything else. It's hard for him. I know that from the fact that it took

me almost 3 years to get there myself.

I was active in the Chiari forums last year when my hopes were with that

being the answer. Unfortunatly, it isn't and reality has to be faced.

Thanks again,

Hugs,

Deborah aka Tenacity

Deborah: I was surfing the Internet to learn more about Chiari Malformation

when I came across this website---The World Arnold-Chiari Malformation

Association. If you are not aware of the website I thought you might be

interested. Winifred

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

I STILL HAVE A HARD TIME WHEN NEW OR PROGRESSION INTERFERES WITH MY

LIFE. AS MUNDANE AS IT IS TO OTHERS , IT IS STILL A LIFE.

2) NONE CAN MAKE ANOTHER ACCEPT ANYTHING. ULTIMATELY, YA HAVE TO SEEK

COUNSELING. MY HUSBAND WOULDN'T AND STILL WON'T GO. HECK I AM NOT GOD,

AND I FIND IT HARD TO BELIEVE THAT ONE THINKS THAT A CHANGE LIKE THIS OR

SIMILAR CAN BE ACCEPTED WITHOUT OUTSIDE HELP.

NANCY

bill and win wrote:

>

> Deborah: I was surfing the Internet to learn more about Chiari Malformation

> when I came across this website---The World Arnold-Chiari Malformation

> Association. If you are not aware of the website I thought you might be

> interested. Winifred

> Re: Advice Needed

> > >

> > > Hi all,

> > >

> > > I agree with Barbara , she read it as you wanted a break from

> seeing

> > > doctors

> > > and I read it as you wanted a break from fighting the disease. That

> well

> > > could

> > > be a difference between men and women. If you are tired of seeing

> > doctors,

> > > I

> > > agree with Barbara that you should be the one to decide what is

> > > enough.

> > > They can experiment with drugs and possibly find one that can help you

> at

> > > times.

> > > You must work with them to fine tune the drugs and if you do not want

> to

> > be

> > > bothered, that is your decision. Be aware that your husband and family

> > care

> > > for

> > > you and want you around as long as possible. There is always hope for

> a

> > > cure.

> > >

> > > Talk it over with your husband and family. This should be a time for

> > > communication and decisions for everyone. I always suggest grief

> > counseling

> > > for

> > > the whole family as it helped us make decisions early in the disorder.

> > >

> > > Take care, Bill Werre

> > >

> > > ==================================================

> > >

> > > kmcrae@... wrote:

> > >

> > > > Well, Tenacity, there it is, just as I said. Men react differently

> than

> > > > women. I answered your note trying to help you by listening to how

> you

> > > felt,

> > > > and Bill answered it by explaining why you had to keep fighting. Both

> > of

> > > us

> > > > were trying to help you, but he is a man and I am a woman, and we

> > answered

> > > > rather typically for our sex. You do have to ask directly for

> > what

> > > you

> > > > want from him and not expect that he will just know. Perhaps he will

> > begin

> > > to

> > > > understand that you do call yourself Tenacity for a reason, and that

> > when

> > > you

> > > > need a little respite from the constant running to doctors, it does

> not

> > > mean

> > > > you are completely giving up. We all need a little vacation from time

> > to

> > > > time; that does not mean we are going to run away from what we know

> we

> > > have

> > > > to do.

> > > > hugs and love, Barbara

> > >

> > > If you do not wish to belong to shydrager, you may

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe

> > >

> > >

[Guest guest]

Elaine,

If you are worried about it expanding, just let it sit for about 10

minutes before putting it through the PEG. Be sure to shake it up

before pouring it into the tube also. It's texture will probably

not clog the tube, but the small balls insdie the capule of some time release

pills such as Prevacid or Prilosec do clog the tube. I always gave

stool softener in the AM as it usually worked within a few hours.

Once it is in the stomach, Metamucil is no problem, from what I have been

told by a gastric doctor.

Take care, Bill Werre

-----------------------------------------------------------------

BandEGrimmesey@... wrote:

Bill

- Did you ever use Metamucil with the PEG tube? I have a fear of

it expanding and clogging - probably stupid, as once it is through the

tube and in the stomach it should be o.k., right? I've been thickening

it and giving it to Bob with a spoon - but then I become concerned that

it might expand and choke him - I've read that this is a possibility (with

swallowing problems.) Just wanted your expert advice! Bowel

movements are becoming more and more of a problem - give Aloe Vera juice,

take stool softeners, prune juice and trying to incorporate one dose of

metamucil each evening.

Thanks so much,

Elaine Grimmesey

[Guest guest]

I thank you Deborah for your reply to my letter. You are a courageous lady

and I think you are handling your perplexing situation WELL. You deserve a

blue ribbon. Winifred

Re: Advice Needed

> Thank you Winifred,

>

> I do have a type 2 chiari malformation of 4 mm but it has been

established

> by 7 neuro's that this is not the cause of my problems. I went for over 2

> years doctor shopping and trying everything, including a STN DBS, to prove

> that this was just Parkinson's disease or something simple to explain...

> like the chiari...instead of the terminal disease MSA.

>

> Next month marks my 3 year anniversary since being dx with PD. I have

> come to the point of acceptance. My body and my fight has brought me to

> where I am. I do accept this diagnosis and know that after so many tests

> and so many specialists that say the same thing....as well as watching my

> body and the symptoms that I experience... that this is MSA. I just need

to

> help my husband see that we have done all that can be done to rule out

> anything else. It's hard for him. I know that from the fact that it took

> me almost 3 years to get there myself.

>

> I was active in the Chiari forums last year when my hopes were with that

> being the answer. Unfortunatly, it isn't and reality has to be faced.

>

> Thanks again,

> Hugs,

> Deborah aka Tenacity

>

>

> Deborah: I was surfing the Internet to learn more about Chiari

Malformation

> when I came across this website---The World Arnold-Chiari Malformation

> Association. If you are not aware of the website I thought you might be

> interested. Winifred

>

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device: http://mobile.msn.com

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Interesting - thanks! I have started, as of yesterday, to dissolve Colace gel caps and poor into tube - they dissolve quite well. So much easier than pricking them with a needle and squeezing out contents! I hear there is liquid form -but don't sell it where I've bought meds - would make life easier!

Thanks again, Bill. I'm still concerned, so I think I'll just use a spoon and feed him the thickened juice/Metamucil until I become braver (more experienced.) Had a good report from a stress test today (indection type - certainly can't do treadmill.) Bob had MINIMAL heart damage from his heart attack - this is such good news, as the word "SIGNIFICANT" heart attack was burned into my brain until today. So, his heart is healing - won't heal completely, of course, and neurological conditions still way off, but at least the ticker is ticking quite well!

Elaine

[Guest guest]

Terri, are you on anything else besides the Imuran? In my case, I had the severe fatigue before any treatment. Then I started Pred & within a few months, the Imuran was added. The fatigue didn't get any worse after the Imuran, but not much better either. I had already had 2 Bell's palsies, the bilateral hearing loss & trigeminal neuralgia before starting treatment, & I haven't had any since (except the continued hearing loss). I started out at 150mg of Imuran a day & stayed on it for 2 years. Never had any problems that I know of.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: mosaicgirl1@...Date: Fri, 14 Sep 2007 15:37:23 +0000Subject: advice needed

Hello All,

I am not sure if there is anyone on Imuran but I need some advice. Since starting it, my fatigue has been terrible. We started low at 100mg per day but I kept getting things like Bell's Palsy, trigeminal neuralgia, hoarseness, etc. In order to try to get things under control we upped it to 150 with hopes of going to 200 mg per day.

Since I got to 150, I have had two viruses one stomach and one upper respiratory. I am having terrible problems with my sinuses. They have me taking mucinex for it but it does not go away. I have had two days of Bell's and a month of hoarseness. The fatigue is still terrible.

Now, my question is this: could these problems be worsening because of the Imuran or could it be I am not taking enough? Does anyone else get severe fatigue from Imuran?

I know you are not doctors, but you have practicle expererience with the drugs not just book knowledge. I am going to speak/see my PCP Monday but I wanted some advice before I went.

Also, does anyone have a worsening of symptoms after doing to much and/or getting hot?

Thanks for listening.

Terri G.

More photos; more messages; more whatever – Get MORE with Windows Live™ Hotmail®. NOW with 5GB storage. Get more!

[Guest guest]

Terri, are you on anything else besides the Imuran? In my case, I had the severe fatigue before any treatment. Then I started Pred & within a few months, the Imuran was added. The fatigue didn't get any worse after the Imuran, but not much better either. I had already had 2 Bell's palsies, the bilateral hearing loss & trigeminal neuralgia before starting treatment, & I haven't had any since (except the continued hearing loss). I started out at 150mg of Imuran a day & stayed on it for 2 years. Never had any problems that I know of.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: mosaicgirl1@...Date: Fri, 14 Sep 2007 15:37:23 +0000Subject: advice needed

Hello All,

I am not sure if there is anyone on Imuran but I need some advice. Since starting it, my fatigue has been terrible. We started low at 100mg per day but I kept getting things like Bell's Palsy, trigeminal neuralgia, hoarseness, etc. In order to try to get things under control we upped it to 150 with hopes of going to 200 mg per day.

Since I got to 150, I have had two viruses one stomach and one upper respiratory. I am having terrible problems with my sinuses. They have me taking mucinex for it but it does not go away. I have had two days of Bell's and a month of hoarseness. The fatigue is still terrible.

Now, my question is this: could these problems be worsening because of the Imuran or could it be I am not taking enough? Does anyone else get severe fatigue from Imuran?

I know you are not doctors, but you have practicle expererience with the drugs not just book knowledge. I am going to speak/see my PCP Monday but I wanted some advice before I went.

Also, does anyone have a worsening of symptoms after doing to much and/or getting hot?

Thanks for listening.

Terri G.

More photos; more messages; more whatever – Get MORE with Windows Live™ Hotmail®. NOW with 5GB storage. Get more!

[Guest guest]

Rose,

I have had Bell's and trigeminal neuralgia off and on for 7-8 years. I

had two days of it this week. When I posted the photo with the droopy

face I think I had it for a couple of days then. I have had really bad

fatigue for about 4 years. I do have times when things get better but I

think it is when I have a remission. But since I have been on the

Imuran I have had very severe fatigue but if you give me a little

prednisone I get a little pep in my step but then the major side effects

start and I have to quit.

Thanks for the info and for listening.

Terri G.

>

>

> Terri, are you on anything else besides the Imuran? In my case, I had

the severe fatigue before any treatment. Then I started Pred & within a

few months, the Imuran was added. The fatigue didn't get any worse after

the Imuran, but not much better either. I had already had 2 Bell's

palsies, the bilateral hearing loss & trigeminal neuralgia before

starting treatment, & I haven't had any since (except the continued

hearing loss). I started out at 150mg of Imuran a day & stayed on it for

2 years. Never had any problems that I know of.

>

> Ramblin' Rose

> Moderator

> A merry heart is good medicine. Proverbs 17:22

> " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant

of the weak and the strong. Because someday in life you will have been

all of these. "

>

> ~ Washington Carver

>

>

>

> To: Neurosarcoidosis@...: mosaicgirl1@...: Fri, 14 Sep 2007 15:37:23

+0000Subject: advice needed

>

>

>

>

>

> Hello All,

> I am not sure if there is anyone on Imuran but I need some advice.

Since starting it, my fatigue has been terrible. We started low at 100mg

per day but I kept getting things like Bell's Palsy, trigeminal

neuralgia, hoarseness, etc. In order to try to get things under control

we upped it to 150 with hopes of going to 200 mg per day.

> Since I got to 150, I have had two viruses one stomach and one upper

respiratory. I am having terrible problems with my sinuses. They have me

taking mucinex for it but it does not go away. I have had two days of

Bell's and a month of hoarseness. The fatigue is still terrible.

> Now, my question is this: could these problems be worsening because of

the Imuran or could it be I am not taking enough? Does anyone else get

severe fatigue from Imuran?

> I know you are not doctors, but you have practicle expererience with

the drugs not just book knowledge. I am going to speak/see my PCP Monday

but I wanted some advice before I went.

> Also, does anyone have a worsening of symptoms after doing to much

and/or getting hot?

> Thanks for listening.

> Terri G.

>

>

>

>

>

>

>

> _________________________________________________________________

> More photos; more messages; more whatever – Get MORE with Windows

Live™ Hotmail®. NOW with 5GB storage.

>

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migr\

ation_HM_mini_5G_0907

>

[Guest guest]

Rose,

I have had Bell's and trigeminal neuralgia off and on for 7-8 years. I

had two days of it this week. When I posted the photo with the droopy

face I think I had it for a couple of days then. I have had really bad

fatigue for about 4 years. I do have times when things get better but I

think it is when I have a remission. But since I have been on the

Imuran I have had very severe fatigue but if you give me a little

prednisone I get a little pep in my step but then the major side effects

start and I have to quit.

Thanks for the info and for listening.

Terri G.

>

>

> Terri, are you on anything else besides the Imuran? In my case, I had

the severe fatigue before any treatment. Then I started Pred & within a

few months, the Imuran was added. The fatigue didn't get any worse after

the Imuran, but not much better either. I had already had 2 Bell's

palsies, the bilateral hearing loss & trigeminal neuralgia before

starting treatment, & I haven't had any since (except the continued

hearing loss). I started out at 150mg of Imuran a day & stayed on it for

2 years. Never had any problems that I know of.

>

> Ramblin' Rose

> Moderator

> A merry heart is good medicine. Proverbs 17:22

> " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant

of the weak and the strong. Because someday in life you will have been

all of these. "

>

> ~ Washington Carver

>

>

>

> To: Neurosarcoidosis@...: mosaicgirl1@...: Fri, 14 Sep 2007 15:37:23

+0000Subject: advice needed

>

>

>

>

>

> Hello All,

> I am not sure if there is anyone on Imuran but I need some advice.

Since starting it, my fatigue has been terrible. We started low at 100mg

per day but I kept getting things like Bell's Palsy, trigeminal

neuralgia, hoarseness, etc. In order to try to get things under control

we upped it to 150 with hopes of going to 200 mg per day.

> Since I got to 150, I have had two viruses one stomach and one upper

respiratory. I am having terrible problems with my sinuses. They have me

taking mucinex for it but it does not go away. I have had two days of

Bell's and a month of hoarseness. The fatigue is still terrible.

> Now, my question is this: could these problems be worsening because of

the Imuran or could it be I am not taking enough? Does anyone else get

severe fatigue from Imuran?

> I know you are not doctors, but you have practicle expererience with

the drugs not just book knowledge. I am going to speak/see my PCP Monday

but I wanted some advice before I went.

> Also, does anyone have a worsening of symptoms after doing to much

and/or getting hot?

> Thanks for listening.

> Terri G.

>

>

>

>

>

>

>

> _________________________________________________________________

> More photos; more messages; more whatever – Get MORE with Windows

Live™ Hotmail®. NOW with 5GB storage.

>

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migr\

ation_HM_mini_5G_0907

>

[Guest guest]

Rose,

I have had Bell's and trigeminal neuralgia off and on for 7-8 years. I

had two days of it this week. When I posted the photo with the droopy

face I think I had it for a couple of days then. I have had really bad

fatigue for about 4 years. I do have times when things get better but I

think it is when I have a remission. But since I have been on the

Imuran I have had very severe fatigue but if you give me a little

prednisone I get a little pep in my step but then the major side effects

start and I have to quit.

Thanks for the info and for listening.

Terri G.

>

>

> Terri, are you on anything else besides the Imuran? In my case, I had

the severe fatigue before any treatment. Then I started Pred & within a

few months, the Imuran was added. The fatigue didn't get any worse after

the Imuran, but not much better either. I had already had 2 Bell's

palsies, the bilateral hearing loss & trigeminal neuralgia before

starting treatment, & I haven't had any since (except the continued

hearing loss). I started out at 150mg of Imuran a day & stayed on it for

2 years. Never had any problems that I know of.

>

> Ramblin' Rose

> Moderator

> A merry heart is good medicine. Proverbs 17:22

> " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant

of the weak and the strong. Because someday in life you will have been

all of these. "

>

> ~ Washington Carver

>

>

>

> To: Neurosarcoidosis@...: mosaicgirl1@...: Fri, 14 Sep 2007 15:37:23

+0000Subject: advice needed

>

>

>

>

>

> Hello All,

> I am not sure if there is anyone on Imuran but I need some advice.

Since starting it, my fatigue has been terrible. We started low at 100mg

per day but I kept getting things like Bell's Palsy, trigeminal

neuralgia, hoarseness, etc. In order to try to get things under control

we upped it to 150 with hopes of going to 200 mg per day.

> Since I got to 150, I have had two viruses one stomach and one upper

respiratory. I am having terrible problems with my sinuses. They have me

taking mucinex for it but it does not go away. I have had two days of

Bell's and a month of hoarseness. The fatigue is still terrible.

> Now, my question is this: could these problems be worsening because of

the Imuran or could it be I am not taking enough? Does anyone else get

severe fatigue from Imuran?

> I know you are not doctors, but you have practicle expererience with

the drugs not just book knowledge. I am going to speak/see my PCP Monday

but I wanted some advice before I went.

> Also, does anyone have a worsening of symptoms after doing to much

and/or getting hot?

> Thanks for listening.

> Terri G.

>

>

>

>

>

>

>

> _________________________________________________________________

> More photos; more messages; more whatever – Get MORE with Windows

Live™ Hotmail®. NOW with 5GB storage.

>

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migr\

ation_HM_mini_5G_0907

>

[Guest guest]

Rose,

I have had Bell's and trigeminal neuralgia off and on for 7-8 years. I

had two days of it this week. When I posted the photo with the droopy

face I think I had it for a couple of days then. I have had really bad

fatigue for about 4 years. I do have times when things get better but I

think it is when I have a remission. But since I have been on the

Imuran I have had very severe fatigue but if you give me a little

prednisone I get a little pep in my step but then the major side effects

start and I have to quit.

Thanks for the info and for listening.

Terri G.

>

>

> Terri, are you on anything else besides the Imuran? In my case, I had

the severe fatigue before any treatment. Then I started Pred & within a

few months, the Imuran was added. The fatigue didn't get any worse after

the Imuran, but not much better either. I had already had 2 Bell's

palsies, the bilateral hearing loss & trigeminal neuralgia before

starting treatment, & I haven't had any since (except the continued

hearing loss). I started out at 150mg of Imuran a day & stayed on it for

2 years. Never had any problems that I know of.

>

> Ramblin' Rose

> Moderator

> A merry heart is good medicine. Proverbs 17:22

> " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant

of the weak and the strong. Because someday in life you will have been

all of these. "

>

> ~ Washington Carver

>

>

>

> To: Neurosarcoidosis@...: mosaicgirl1@...: Fri, 14 Sep 2007 15:37:23

+0000Subject: advice needed

>

>

>

>

>

> Hello All,

> I am not sure if there is anyone on Imuran but I need some advice.

Since starting it, my fatigue has been terrible. We started low at 100mg

per day but I kept getting things like Bell's Palsy, trigeminal

neuralgia, hoarseness, etc. In order to try to get things under control

we upped it to 150 with hopes of going to 200 mg per day.

> Since I got to 150, I have had two viruses one stomach and one upper

respiratory. I am having terrible problems with my sinuses. They have me

taking mucinex for it but it does not go away. I have had two days of

Bell's and a month of hoarseness. The fatigue is still terrible.

> Now, my question is this: could these problems be worsening because of

the Imuran or could it be I am not taking enough? Does anyone else get

severe fatigue from Imuran?

> I know you are not doctors, but you have practicle expererience with

the drugs not just book knowledge. I am going to speak/see my PCP Monday

but I wanted some advice before I went.

> Also, does anyone have a worsening of symptoms after doing to much

and/or getting hot?

> Thanks for listening.

> Terri G.

>

>

>

>

>

>

>

> _________________________________________________________________

> More photos; more messages; more whatever – Get MORE with Windows

Live™ Hotmail®. NOW with 5GB storage.

>

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migr\

ation_HM_mini_5G_0907

>

[Guest guest]

rose,

I forgot to answer your question. Imuran is the only thing I am using

for immunosuppression.

Terri

>

>

> Terri, are you on anything else besides the Imuran? In my case, I had

the severe fatigue before any treatment. Then I started Pred & within a

few months, the Imuran was added. The fatigue didn't get any worse after

the Imuran, but not much better either. I had already had 2 Bell's

palsies, the bilateral hearing loss & trigeminal neuralgia before

starting treatment, & I haven't had any since (except the continued

hearing loss). I started out at 150mg of Imuran a day & stayed on it for

2 years. Never had any problems that I know of.

>

> Ramblin' Rose

> Moderator

> A merry heart is good medicine. Proverbs 17:22

> " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant

of the weak and the strong. Because someday in life you will have been

all of these. "

>

> ~ Washington Carver

>

>

>

> To: Neurosarcoidosis@...: mosaicgirl1@...: Fri, 14 Sep 2007 15:37:23

+0000Subject: advice needed

>

>

>

>

>

> Hello All,

> I am not sure if there is anyone on Imuran but I need some advice.

Since starting it, my fatigue has been terrible. We started low at 100mg

per day but I kept getting things like Bell's Palsy, trigeminal

neuralgia, hoarseness, etc. In order to try to get things under control

we upped it to 150 with hopes of going to 200 mg per day.

> Since I got to 150, I have had two viruses one stomach and one upper

respiratory. I am having terrible problems with my sinuses. They have me

taking mucinex for it but it does not go away. I have had two days of

Bell's and a month of hoarseness. The fatigue is still terrible.

> Now, my question is this: could these problems be worsening because of

the Imuran or could it be I am not taking enough? Does anyone else get

severe fatigue from Imuran?

> I know you are not doctors, but you have practicle expererience with

the drugs not just book knowledge. I am going to speak/see my PCP Monday

but I wanted some advice before I went.

> Also, does anyone have a worsening of symptoms after doing to much

and/or getting hot?

> Thanks for listening.

> Terri G.

>

>

>

>

>

>

>

> _________________________________________________________________

> More photos; more messages; more whatever – Get MORE with Windows

Live™ Hotmail®. NOW with 5GB storage.

>

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migr\

ation_HM_mini_5G_0907

>

[Guest guest]

rose,

I forgot to answer your question. Imuran is the only thing I am using

for immunosuppression.

Terri

>

>

> Terri, are you on anything else besides the Imuran? In my case, I had

the severe fatigue before any treatment. Then I started Pred & within a

few months, the Imuran was added. The fatigue didn't get any worse after

the Imuran, but not much better either. I had already had 2 Bell's

palsies, the bilateral hearing loss & trigeminal neuralgia before

starting treatment, & I haven't had any since (except the continued

hearing loss). I started out at 150mg of Imuran a day & stayed on it for

2 years. Never had any problems that I know of.

>

> Ramblin' Rose

> Moderator

> A merry heart is good medicine. Proverbs 17:22

> " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant

of the weak and the strong. Because someday in life you will have been

all of these. "

>

> ~ Washington Carver

>

>

>

> To: Neurosarcoidosis@...: mosaicgirl1@...: Fri, 14 Sep 2007 15:37:23

+0000Subject: advice needed

>

>

>

>

>

> Hello All,

> I am not sure if there is anyone on Imuran but I need some advice.

Since starting it, my fatigue has been terrible. We started low at 100mg

per day but I kept getting things like Bell's Palsy, trigeminal

neuralgia, hoarseness, etc. In order to try to get things under control

we upped it to 150 with hopes of going to 200 mg per day.

> Since I got to 150, I have had two viruses one stomach and one upper

respiratory. I am having terrible problems with my sinuses. They have me

taking mucinex for it but it does not go away. I have had two days of

Bell's and a month of hoarseness. The fatigue is still terrible.

> Now, my question is this: could these problems be worsening because of

the Imuran or could it be I am not taking enough? Does anyone else get

severe fatigue from Imuran?

> I know you are not doctors, but you have practicle expererience with

the drugs not just book knowledge. I am going to speak/see my PCP Monday

but I wanted some advice before I went.

> Also, does anyone have a worsening of symptoms after doing to much

and/or getting hot?

> Thanks for listening.

> Terri G.

>

>

>

>

>

>

>

> _________________________________________________________________

> More photos; more messages; more whatever – Get MORE with Windows

Live™ Hotmail®. NOW with 5GB storage.

>

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migr\

ation_HM_mini_5G_0907

>

[Guest guest]

Terri, I wonder if you need to add another med; multisystem sarc is often controlled better with a combination. Sometimes it takes some experimenting to find the best combo for you. I know you've told me where you live & who you see for your NS, but I don't recall. Have you talked about adding something else (besides Pred)?

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

Kick back and relax with hot games and cool activities at the Messenger Café. Play now!

[Guest guest]

Terri, I wonder if you need to add another med; multisystem sarc is often controlled better with a combination. Sometimes it takes some experimenting to find the best combo for you. I know you've told me where you live & who you see for your NS, but I don't recall. Have you talked about adding something else (besides Pred)?

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

Kick back and relax with hot games and cool activities at the Messenger Café. Play now!

[Guest guest]

Terri, I wonder if you need to add another med; multisystem sarc is often controlled better with a combination. Sometimes it takes some experimenting to find the best combo for you. I know you've told me where you live & who you see for your NS, but I don't recall. Have you talked about adding something else (besides Pred)?

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

Kick back and relax with hot games and cool activities at the Messenger Café. Play now!

[Guest guest]

Terri, I wonder if you need to add another med; multisystem sarc is often controlled better with a combination. Sometimes it takes some experimenting to find the best combo for you. I know you've told me where you live & who you see for your NS, but I don't recall. Have you talked about adding something else (besides Pred)?

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

Kick back and relax with hot games and cool activities at the Messenger Café. Play now!

[Guest guest]

Rose,

If you remember, I do not have a definitive diagnosis. I am fighting

for every med I get. Since they can't decide on whether it is MS or NS

(I feel it is NS) I get treated for symptoms mostly.

I am going to go to sick call to see my PCP for my sinus issues in the

am and am going to ask him a few questions and then I am going to call

my Neuro and talk to him about adding something with the Imuran but I

don't think he will yet bedcause I am not up to 200 mg a day yet. But I

am not sure whether I have an infection so I don't know if I can up the

Imuran 50 mg more.... my Neuro doesn't want to deal with things like

sinus infection etc.

Well, you didn't ask for all of that but there it is. Take care.

Terri G.

>

>

> Terri, I wonder if you need to add another med; multisystem sarc is

often controlled better with a combination. Sometimes it takes some

experimenting to find the best combo for you. I know you've told me

where you live & who you see for your NS, but I don't recall. Have you

talked about adding something else (besides Pred)?

>

> Ramblin' Rose

> Moderator

> A merry heart is good medicine. Proverbs 17:22

> " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant

of the weak and the strong. Because someday in life you will have been

all of these. "

>

> ~ Washington Carver

>

> _________________________________________________________________

> Kick back and relax with hot games and cool activities at the

Messenger Café.

> http://www.cafemessenger.com?ocid=TXT_TAGLM_SeptWLtagline

>

[Guest guest]

Rose,

If you remember, I do not have a definitive diagnosis. I am fighting

for every med I get. Since they can't decide on whether it is MS or NS

(I feel it is NS) I get treated for symptoms mostly.

I am going to go to sick call to see my PCP for my sinus issues in the

am and am going to ask him a few questions and then I am going to call

my Neuro and talk to him about adding something with the Imuran but I

don't think he will yet bedcause I am not up to 200 mg a day yet. But I

am not sure whether I have an infection so I don't know if I can up the

Imuran 50 mg more.... my Neuro doesn't want to deal with things like

sinus infection etc.

Well, you didn't ask for all of that but there it is. Take care.

Terri G.

>

>

> Terri, I wonder if you need to add another med; multisystem sarc is

often controlled better with a combination. Sometimes it takes some

experimenting to find the best combo for you. I know you've told me

where you live & who you see for your NS, but I don't recall. Have you

talked about adding something else (besides Pred)?

>

> Ramblin' Rose

> Moderator

> A merry heart is good medicine. Proverbs 17:22

> " How far you go in life depends on your being tender with the young,

compassionate with the aged, sympathetic with the striving, and tolerant

of the weak and the strong. Because someday in life you will have been

all of these. "

>

> ~ Washington Carver

>

> _________________________________________________________________

> Kick back and relax with hot games and cool activities at the

Messenger Café.

> http://www.cafemessenger.com?ocid=TXT_TAGLM_SeptWLtagline

>