Re: Roll Call, please.............

[Guest guest]

Hi family member of the Group,

My husband is the one stricken with this monster disease. He was hospitalized 2 x this year. The first incident happened in June--where we almost lost him due to respiratory complications. He just came out a few days ago, with complications having abdomenon pains, of which his output of urine/bowel movements were little. Both incidents landed hime in ICU. But of course, it always start with being septic. I'm almost thinking that his sarcoids are taking over. He is not being treated at all for neuro-sarcoidosis. The lst incident of having respiratory complications, his nerologist conveyed that there is really nothing that can be done, and the sarcoids will eventually take over. Other ailments arose which took precedence were his bed sores and respiratory--which he's scheduled to take the second part of a sleep study that showed he had all 3 apneas. He received

kidney renal exams the 2nd go round--all suposedly back to normal. I cannot emphazise that we, the caretakers, must be the "advocate" for our loved ones. We have home-health care and I will address the issue of the color of his urine, and maybe it is clear--but at the same time, I see sediments in the urine accumulating. The home-health nurse have called our PCP, but did not have any concern about a urine analysis/culture. I just don't understand. At the ER, their nurse/tech will tell me how his behavior is (being mean/uncooperative) and will ask if he has any behavior problems. I asked them, "Do you know what having sepsis can do to a pt., of which you just told me he has an infection?" God give us all Strength!

Subject: Roll Call, please.............To: neurosarcoidosis Date: Monday, September 13, 2010, 5:53 AM

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

I () am on here not because I hae sarc but because my fiance does and I update him and hearing from other helps me comfort him to let him know that he is not alone and I research about situations, etc. Recently he went to a Rheumatologist and she found some lumps on his head he contacted the pulmologist that he sees to get a CAT scan he he denied it. I was like what in the world. So now the Rhematologist thinks that he may have Neuroscarcoidosis he is pulmologist will not let her check. Not sure what to do. Any advice?

 

Hi everyone,

      Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call.  We have 600+ members and the list

is sooooo quiet!  This worries all of your Owners and Moderators --

as we really do worry about each and every one of you.  We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc. 

 

      Please just take a moment and post how you are.  You don't have

to write a book -- unless you want too!  :-)

 

      I will start ----  About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October.  Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc.  You

get the message.  When I go off Imuran, I will have no immuneoppresents

(sp) at all!   This worries me.  I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver..... 

 

      Any comments will be appreciated.  Thanks.

Hugs,DarleneNS Co-Owner/Moderator

-- Zimmermanandrea.d.zimmerman@...

[Guest guest]

Here! Here!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Hi ,

Thank you so much for being there for your fiance. It makes all the

difference in the world having someone close who believes in you and

wants to help. Some of those with Sarc do not have that. I am so

lucky that I have a wonderful husband and 5 grown children who are

my support.

As for your fiance (what is his name? Don't want to call him fiance all

the time) :-). I would advise him to get a different Doctor. If his Doctor is not

willing to check things out, then he needs to find one that is willing.

Please keep us informed and thank you for answering the roll call. Sending

best wishes to both.

Hugs,DarleneNS Co-Owner/Moderator

Re: Roll Call, please.............

I () am on here not because I hae sarc but because my fiance does and I update him and hearing from other helps me comfort him to let him know that he is not alone and I research about situations, etc. Recently he went to a Rheumatologist and she found some lumps on his head he contacted the pulmologist that he sees to get a CAT scan he he denied it. I was like what in the world. So now the Rhematologist thinks that he may have Neuroscarcoidosis he is pulmologist will not let her check. Not sure what to do. Any advice?

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

-- Zimmermanandrea.d.zimmerman@...

[Guest guest]



Hi June,

Thanks for answering the Roll Call and for being there for your

husband. You are right, the caretakers must be the advocate for their

loved ones. I would not be here today if it was not for my hubby and

5 grown children. They were at the hospital all the time and they sure

gave their opinions to the Doctors and Nurses! LOL. Fortunately, I

had 2 great Doctors who literally saved my life.

Do not be afraid to get a second opinion......even if your Doctor

does not like it. YOU are paying HIM and it is your husband who has

to suffer......so stand tall and fight. The old sarc monster is NOT going

to win this battle --- not if we all fight hard.......

Please tell hubby hello for us and you take care. Thanks again for

writing and please keep us informed.

Hugs,DarleneNS Co-Owner/Moderator

Roll Call, please.............To: neurosarcoidosis Date: Monday, September 13, 2010, 5:53 AM

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

Thanks, Rose! We have 3 of you out of 600+ that has replied..............:-)

Hugs,

Darlene

RE: Roll Call, please.............

Here! Here!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

For the last about three weeks, I have been experiencing a lot of twitching with my upper torso moving back and forth like a pendulum. Since body pain has worsened, my PCP has put me on 10 mg of Prednisone instead of 5 mg and that's bringing back the acid reflux, for which I have no money to purchase meds. Because I am unable to work now my bills are piling up (eviction notice and utility cutoff). However, because of my belief in my Jehovah God and after church service yesterday, I know that "It Shall Be!" I am not worried, because I know that God has always fixed things in the past, and I know He has done the same this time. I have to go back to Energy Assistance tomorrow to take some pertinent papers to keep my utilities on, especially since I am on their "Special Needs" list. Then

it's off to seek help to get my rent up to date. I sometimes wanted to become depressed as the result of all these things; but I know better ... and I must stay strong for my college son! Isn't that what mothers do? (smile)Well, there are most of my symptoms; except of course the numbing sensations are back in my left leg. All in all, though, I'm blessed by the best!!Have a blessed day!! L. -Maye (Baltimore, MD)To: neurosarcoidosis Sent: Mon, September 13, 2010 5:53:57 AMSubject: Roll Call, please.............

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

Hi this is Jackie the poet. lol As you all know I haven't been away too much. This could be good or bad. I will let you chose.

I am well sort of, head cold causing depression cuz I don't feel like going anywhere. This too shall pass.

Anyway I hope all of you are doing fine and getting the rest and recuperation we all need at times.

So another one has checked in.

Jackie

Roll Call, please.............

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

Thank you, Jackie. Can't believe it's getting close to cold & flu season already. Drink those fluids, girl!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Mon, 13 Sep 2010 17:33:04 -0500Subject: Re: Roll Call, please.............

Hi this is Jackie the poet. lol As you all know I haven't been away too much. This could be good or bad. I will let you chose.

I am well sort of, head cold causing depression cuz I don't feel like going anywhere. This too shall pass.

Anyway I hope all of you are doing fine and getting the rest and recuperation we all need at times.

So another one has checked in.

Jackie

Roll Call, please.............

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

Hey, Jackie, thanks for posting....Hey, we always enjoy your postings.

I am glad you are "sort of"" well......:-) We all need some good days,

so hang in there and keep posting!

Hugs,DarleneNS Co-Owner/Moderator

Roll Call, please.............

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]



Hi ,

Thanks for posting. I am so sorry you are going through all of this. It seems

like we all take one step forward and two backward sometimes. Hang in there

and keep the faith.........HE will provide. Sometimes we wonder "Why us and why

now?" but I firmly believe there is a reason and some day we will know. In the

meantime, keep fighting!!!!

Hugs,DarleneNS Co-Owner/Moderator

Roll Call, please.............

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

I will keep you in my prayers . As the caregiver I see the struggles as well. As for the acid reflux would an over the counter pepcid like medicine work? That is what we use here for since she is also on the prednisone, back up to 7.5 mg a day. Take care.mattSubject: Re: Roll Call, please.............To: Neurosarcoidosis Date: Monday, September 13, 2010, 7:41 PM



Hi ,

Thanks for posting. I am so sorry you are going through all of this. It seems

like we all take one step forward and two backward sometimes. Hang in there

and keep the faith.........HE will provide. Sometimes we wonder "Why us and why

now?" but I firmly believe there is a reason and some day we will know. In the

meantime, keep fighting!!!!

Hugs,DarleneNS Co-Owner/Moderator

Roll Call, please.............

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

June I understand all too well of what you speak. I am the care giver for my wife. I found out first hand after her fall in May when she was recuperating at the rehab center that unless I was there advocating for her needs they did not always get met. So yes we the care givers must strongly advocate for our loved ones. We were forced to get home care here so that I could return to work and there have been arguments over having someone here to help out. However it is a necessity and even though she knows that they are there to help her she will fight them. It is the independence thing. I will keep you in my prayers and wish you continued strength because it is our fight as well as theirs. take care.Matt

Subject: Roll Call, please.............To: neurosarcoidosis Date: Monday, September 13, 2010, 5:53 AM

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

Matt is here as well. Been sort of off line for a few days while doing some painting etc at home. Everyone Take care & be well.mattSubject: Re: Roll Call, please.............To: Neurosarcoidosis Date: Monday, September 13, 2010, 4:05 PM

Thanks, Rose! We have 3 of you out of 600+ that has replied..............:-)

Hugs,

Darlene

RE: Roll Call, please.............

Here! Here!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Hi,

Since moving back to my hometown at the end of July, I have been really busy

catching up on - everything! This has been putting a strain on me and in the

last few weeks it's really caught up, my balance is off and the fatigue is so

bad that for every day I'm up, I need a day in bed.

I saw my neuro last week and we are going to start methylpred once a month

again.

I have had a constant feeling of a lump in my throat for sometime, and asked him

about this. He said he would probably refer me back to the respiratory dr's at

the hospital I go to, but to get the ball rolling sent me for some bloods, a

chest x-ray and this week I'm having a lung function test...

.... does anyone know what that has to do with a lump in the throat or has anyone

experienced the same...

Rach

>

> Hi everyone,

> Hey, it is nearly Fall so let's start a new season (a little early) and

> have a really good Roll Call. We have 600+ members and the list

> is sooooo quiet! This worries all of your Owners and Moderators --

> as we really do worry about each and every one of you. We need to

> know if you are ok; or very ill; latest in your life; in remission and too

> busy having fun to post; etc.

>

> Please just take a moment and post how you are. You don't have

> to write a book -- unless you want too! :-)

>

> I will start ---- About 6 weeks ago, my Doctor decided he wanted to

> take me off some of my meds........so he has cut my Imuran in half again

> and plans to take me off it completely the middle of October. Since I

> started this, my severe headaches have returned; I ache all over -- muscles,

> joints, all over; I am nauseated all the time; want to sleep ALL the time;

> have absolutely NO energy at all; have off and on diahreah, and etc. You

> get the message. When I go off Imuran, I will have no immuneoppresents

> (sp) at all! This worries me. I tried to argue with the Doctor, but he says

> he is worried about this drug damaging my liver.....

>

> Any comments will be appreciated. Thanks.

> Hugs,

> Darlene

> NS Co-Owner/Moderator

>

[Guest guest]

June, where do y'all live? Has he been diagnosed with NS? For a neurologist to say that "there's nothing to be done and the sarc will just take over" is ignorant at best & possibly negligent. Do these people never read their own literature?!? The last few years has seen a huge increase in research on sarc, with many options for treatment. Kick the idiots & bozos to the curb & look for someone else. Let us know where you are located & we might have some suggestions. If he has NS, he needs much more aggressive therapy. Are you familiar with the website for FSR (Foundation for Sarcoidosis Research)? If not, that's a great place to get updated info.

www.stopsarcoidosis.org.

It's exhausting & discouraging to have to do the work, but it's not just sarc/NS. Even women having babies need to do their own research to avoid just being put onto the conveyor belt of medicalized childbirth, with no real informed consent. (Sorry, as a retired nurse-midwife I get very frustrated.) The medical establishment has gone on record for the past few years strongly encouraging doctors & other health care providers to work with patients & families on true informed consent. Unfortunately, out in the real world, other than midwives & nurse practitioners, not many providers actually do this. I know only a few docs--couple of ob's, my neuro (with reminders from me), a critical care doc. With most of them, it's business as usual. But we face the consequences of health care decisions & need to be assertive in asking for info on risks/benefits, alternatives, & 2nd opinions (or more). As Larry the Cable Guy says, "Let's git 'er done!"

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

> To: Neurosarcoidosis ; junebug_4647@...> Date: Tue, 14 Sep 2010 01:01:12 +0000> Subject: Re: Re: Roll Call, please.............> > My pulm called a sarc spec up north that she knows when she ran out of options and he recommended chorloquine 250 mg plus 10 mg of pred so far it seems 2 b working> > ----------> Sent from AT & T's Wireless network using Mobile Email> > - Roll Call, please.............> To: neurosarcoidosis > Date: Monday, September 13, 2010, 5:53 AM> > > > > > > > Hi everyone,> Hey, it is nearly Fall so let's start a new season (a little early) and > have a really good Roll Call. We have 600+ members and the list > is sooooo quiet! This worries all of your Owners and Moderators --> as we really do worry about each and every one of you. We need to> know if you are ok; or very ill; latest in your life; in remission and too> busy having fun to post; etc. > > Please just take a moment and post how you are. You don't have> to write a book -- unless you want too! :-)> > I will start ---- About 6 weeks ago, my Doctor decided he wanted to> take me off some of my meds........so he has cut my Imuran in half again> and plans to take me off it completely the middle of October. Since I > started this, my severe headaches have returned; I ache all over -- muscles,> joints, all over; I am nauseated all the time; want to sleep ALL the time; > have absolutely NO energy at all; have off and on diahreah, and etc. You> get the message. When I go off Imuran, I will have no immuneoppresents> (sp) at all! This worries me. I tried to argue with the Doctor, but he says > he is worried about this drug damaging my liver..... > > Any comments will be appreciated. Thanks.> Hugs,> Darlene> NS Co-Owner/Moderator> > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]



June, I remember you.. I see you're getting the old run around and I couldn't agree with Rose more.. anytime you find a doctor that you find that is not intrested in you or your disease that "GET RID OF THEM" When I go to a new doctor, I like interview them.. and if they have a closed mind as to the old version of Sarcoid. I just tell well thanks but I need a doctor that wants to help me.. and I don't think that's you.. and walk out.. You have a right to whom takes care of you and whom doesn't.. Good luck, sweetie.. Hugs,

Co Moderator

Roll Call, please.............To: neurosarcoidosis Date: Monday, September 13, 2010, 5:53 AM

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

Darlene,I'm here still awaiting when I will get my already over due Remicade, but wanted to say, does he check your liver enzymes?  Do you take Milk Thistle for healthy liver? 

I would say if your liver functions are fine, then why rock the boat, I am on 3 immune suppressants, and my liver functions are fine, my doctor worries from time to time, but knows I do better, so you should talk to

him about that.  If you liver is OK, then it's  not worth feeling bad, if your liver starts acting up, then would be the time to do something not before. hang in there, I know just missing Remicade one week so far, I'm tired,

hot, lumps and bumps popping up everywhere, and tired, even depressed. but hanging in there.  Keep us informed, as I will after the remicade. love to all, Marla  

 

Hi everyone,

      Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call.  We have 600+ members and the list

is sooooo quiet!  This worries all of your Owners and Moderators --

as we really do worry about each and every one of you.  We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc. 

 

      Please just take a moment and post how you are.  You don't have

to write a book -- unless you want too!  :-)

 

      I will start ----  About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October.  Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc.  You

get the message.  When I go off Imuran, I will have no immuneoppresents

(sp) at all!   This worries me.  I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver..... 

 

      Any comments will be appreciated.  Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

Still alive, rough year. In ICCU 3 times plus surgery, blood transfusion,

pericarditis. Sarc is in MAJOR flare right now after surgery, everything is

lighting up. Trying to hang in there. Not immunosuppressed at the moment. Taking

anti-seizure, anti-anxiety and pain killers. No insurance so trying to get help.

Read email daily just do not have anything to add that would not just be me

whining at this point. I pray for everyone I see struggling on here.

>

[Guest guest]

I am on board here. They have to want to help me Not the other way. I pay them so study up Doc cause here I come and I have a plethora of questions.

Jackie

Roll Call, please.............To: neurosarcoidosis Date: Monday, September 13, 2010, 5:53 AM

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

Thanks for your reply, Matt, but no it's gotten to the point that OTC meds no longer work. Mine has been so bad that I have been hospitalized as the result of dehydration which caused my kidney to shut down. Even if OTC meds were affective, I have to decide whether to buy food or the meds --- no money at all!!I'm sure everything will get better soon -- just waiting for disability to kick back in. Thanks again and God bless!!To: Neurosarcoidosis Sent: Mon, September 13, 2010 8:05:29 PMSubject: Re: Roll Call, please.............

I will keep you in my prayers . As the caregiver I see the struggles as well. As for the acid reflux would an over the counter pepcid like medicine work? That is what we use here for since she is also on the prednisone, back up to 7.5 mg a day. Take care.mattSubject: Re: Roll Call, please.............To: Neurosarcoidosis Date: Monday, September 13, 2010, 7:41 PM



Hi ,

Thanks for posting. I am so sorry you are going through all of this. It seems

like we all take one step forward and two backward sometimes. Hang in there

and keep the faith.........HE will provide. Sometimes we wonder "Why us and why

now?" but I firmly believe there is a reason and some day we will know. In the

meantime, keep fighting!!!!

Hugs,DarleneNS Co-Owner/Moderator

Roll Call, please.............

Hi everyone,

Hey, it is nearly Fall so let's start a new season (a little early) and

have a really good Roll Call. We have 600+ members and the list

is sooooo quiet! This worries all of your Owners and Moderators --

as we really do worry about each and every one of you. We need to

know if you are ok; or very ill; latest in your life; in remission and too

busy having fun to post; etc.

Please just take a moment and post how you are. You don't have

to write a book -- unless you want too! :-)

I will start ---- About 6 weeks ago, my Doctor decided he wanted to

take me off some of my meds........so he has cut my Imuran in half again

and plans to take me off it completely the middle of October. Since I

started this, my severe headaches have returned; I ache all over -- muscles,

joints, all over; I am nauseated all the time; want to sleep ALL the time;

have absolutely NO energy at all; have off and on diahreah, and etc. You

get the message. When I go off Imuran, I will have no immuneoppresents

(sp) at all! This worries me. I tried to argue with the Doctor, but he says

he is worried about this drug damaging my liver.....

Any comments will be appreciated. Thanks.

Hugs,DarleneNS Co-Owner/Moderator

[Guest guest]

Re: Roll Call, please.............

>To: Neurosarcoidosis

>Date: Monday, September 13, 2010, 7:41 PM

>

>

>

>

>Hi ,

> Thanks for posting. I am so sorry you are going through all of this. It

>seems

>like we all take one step forward and two backward sometimes. Hang in there

>and keep the faith.........HE will provide. Sometimes we wonder "Why us and

>why

>

>now?" but I firmly believe there is a reason and some day we will know. In the

>

>meantime, keep fighting!!!!

>Hugs,

>Darlene

>NS Co-Owner/Moderator

>

>

>

>

>

>

> Roll Call, please.............

>>

>>

>>Hi everyone,

>> Hey, it is nearly Fall so let's start a new season (a little early) and

>>

>>have a really good Roll Call. We have 600+ members and the list

>>is sooooo quiet! This worries all of your Owners and Moderators --

>>as we really do worry about each and every one of you. We need to

>>know if you are ok; or very ill; latest in your life; in remission and too

>>busy having fun to post; etc.

>>

>> Please just take a moment and post how you are. You don't have

>>to write a book -- unless you want too! :-)

>>

>> I will start ---- About 6 weeks ago, my Doctor decided he wanted to

>>take me off some of my meds........so he has cut my Imuran in half again

>>and plans to take me off it completely the middle of October. Since I

>>started this, my severe headaches have returned; I ache all over --

muscles,

>>joints, all over; I am nauseated all the time; want to sleep ALL the time;

>>have absolutely NO energy at all; have off and on diahreah, and etc. You

>>get the message. When I go off Imuran, I will have no immuneoppresents

>>(sp) at all! This worries me. I tried to argue with the Doctor, but he

>>says

>>

>>he is worried about this drug damaging my liver.....

>>

>> Any comments will be appreciated. Thanks.

>>Hugs,

>>Darlene

>>NS Co-Owner/Moderator

>>

[Guest guest]

Posted this two days ago but I'll re-post it in reference to the roll-call!!

Having a very bad week. Started our with pure lethargy. and ended on Saturday with leaving work not being able to breathe. Up to 40mg of Prednisone (and still rising),, normal plaquinil and methotrexate and more pain pills then on a normal week (but not near as much as on my worst of weeks, although increasing since last post)., Then they changed the formulation of Oxycontin and I don't know if it's my mind (I normally don't do well on new formulations but the more days I'm on it the less I think it's the my mind) but I've been getting worse Headaches then I normally do, worse stomach cramping and constipation. Oh and I forgot the hot flashes and cold sweats have been unbearable (before taking the new pills)

That's it for me

Mitch

Re: Roll Call, please.............

>To: Neurosarcoidosis

>Date: Monday, September 13, 2010, 7:41 PM

>

>

>

>

>Hi ,

> Thanks for posting. I am so sorry you are going through all of this. It

>seems

>like we all take one step forward and two backward sometimes. Hang in there

>and keep the faith.........HE will provide. Sometimes we wonder "Why us and

>why

>

>now?" but I firmly believe there is a reason and some day we will know. In the

>

>meantime, keep fighting!!!!

>Hugs,

>Darlene

>NS Co-Owner/Moderator

>

>

>

>

>

>

> Roll Call, please.............

>>

>>

>>Hi everyone,

>> Hey, it is nearly Fall so let's start a new season (a little early) and

>>

>>have a really good Roll Call. We have 600+ members and the list

>>is sooooo quiet! This worries all of your Owners and Moderators --

>>as we really do worry about each and every one of you. We need to

>>know if you are ok; or very ill; latest in your life; in remission and too

>>busy having fun to post; etc.

>>

>> Please just take a moment and post how you are. You don't have

>>to write a book -- unless you want too! :-)

>>

>> I will start ---- About 6 weeks ago, my Doctor decided he wanted to

>>take me off some of my meds........so he has cut my Imuran in half again

>>and plans to take me off it completely the middle of October. Since I

>>started this, my severe headaches have returned; I ache all over --

muscles,

>>joints, all over; I am nauseated all the time; want to sleep ALL the time;

>>have absolutely NO energy at all; have off and on diahreah, and etc. You

>>get the message. When I go off Imuran, I will have no immuneoppresents

>>(sp) at all! This worries me. I tried to argue with the Doctor, but he

>>says

>>

>>he is worried about this drug damaging my liver.....

>>

>> Any comments will be appreciated. Thanks.

>>Hugs,

>>Darlene

>>NS Co-Owner/Moderator

>>

[Guest guest]

Oh, man, talk about lazy! Recycling your posts! (Just kidding, of course)Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: mjcv29a@...Date: Tue, 14 Sep 2010 19:03:32 -0400Subject: Re: Roll Call, please.............Posted this two days ago but I'll re-post it in reference to the roll-call!! Having a very bad week. Started our with pure lethargy. and ended on Saturday with leaving work not being able to breathe. Up to 40mg of Prednisone (and still rising),, normal plaquinil and methotrexate and more pain pills then on a normal week (but not near as much as on my worst of weeks, although increasing since last post)., Then they changed the formulation of Oxycontin and I don't know if it's my mind (I normally don't do well on new formulations but the more days I'm on it the less I think it's the my mind) but I've been getting worse Headaches then I normally do, worse stomach cramping and constipation. Oh and I forgot the hot flashes and cold sweats have been unbearable (before taking the new pills)That's it for meMitch Re: Roll Call, please.............>To: Neurosarcoidosis >Date: Monday, September 13, 2010, 7:41 PM>>> > >Hi ,> Thanks for posting. I am so sorry you are going through all of this. It >seems>like we all take one step forward and two backward sometimes. Hang in there>and keep the faith.........HE will provide. Sometimes we wonder "Why us and >why >>now?" but I firmly believe there is a reason and some day we will know. In the >>meantime, keep fighting!!!!>Hugs,>Darlene>NS Co-Owner/Moderator> > > > > > > Roll Call, please.............>>>> >>Hi everyone,>> Hey, it is nearly Fall so let's start a new season (a little early) and >>>>have a really good Roll Call. We have 600+ members and the list >>is sooooo quiet! This worries all of your Owners and Moderators -->>as we really do worry about each and every one of you. We need to>>know if you are ok; or very ill; latest in your life; in remission and too>>busy having fun to post; etc. >> >> Please just take a moment and post how you are. You don't have>>to write a book -- unless you want too! :-)>> >> I will start ---- About 6 weeks ago, my Doctor decided he wanted to>>take me off some of my meds........so he has cut my Imuran in half again>>and plans to take me off it completely the middle of October. Since I >>started this, my severe headaches have returned; I ache all over -- muscles,>>joints, all over; I am nauseated all the time; want to sleep ALL the time; >>have absolutely NO energy at all; have off and on diahreah, and etc. You>>get the message. When I go off Imuran, I will have no immuneoppresents>>(sp) at all! This worries me. I tried to argue with the Doctor, but he >>says >>>>he is worried about this drug damaging my liver..... >> >> Any comments will be appreciated. Thanks.>>Hugs,>>Darlene>>NS Co-Owner/Moderator>>

[Guest guest]

Hey, you have no idea how much energy it took to do that.

Re: Roll Call, please.............

>To: Neurosarcoidosis

>Date: Monday, September 13, 2010, 7:41 PM

>

>

>

>

>Hi ,

> Thanks for posting. I am so sorry you are going through all of this. It

>seems

>like we all take one step forward and two backward sometimes. Hang in there

>and keep the faith.........HE will provide. Sometimes we wonder "Why us and

>why

>

>now?" but I firmly believe there is a reason and some day we will know. In the

>

>meantime, keep fighting!!!!

>Hugs,

>Darlene

>NS Co-Owner/Moderator

>

>

>

>

>

>

> Roll Call, please.............

>>

>>

>>Hi everyone,

>> Hey, it is nearly Fall so let's start a new season (a little early) and

>>

>>have a really good Roll Call. We have 600+ members and the list

>>is sooooo quiet! This worries all of your Owners and Moderators --

>>as we really do worry about each and every one of you. We need to

>>know if you are ok; or very ill; latest in your life; in remission and too

>>busy having fun to post; etc.

>>

>> Please just take a moment and post how you are. You don't have

>>to write a book -- unless you want too! :-)

>>

>> I will start ---- About 6 weeks ago, my Doctor decided he wanted to

>>take me off some of my meds........so he has cut my Imuran in half again

>>and plans to take me off it completely the middle of October. Since I

>>started this, my severe headaches have returned; I ache all over --

muscles,

>>joints, all over; I am nauseated all the time; want to sleep ALL the time;

>>have absolutely NO energy at all; have off and on diahreah, and etc. You

>>get the message. When I go off Imuran, I will have no immuneoppresents

>>(sp) at all! This worries me. I tried to argue with the Doctor, but he

>>says

>>

>>he is worried about this drug damaging my liver.....

>>

>> Any comments will be appreciated. Thanks.

>>Hugs,

>>Darlene

>>NS Co-Owner/Moderator

>>