Re: Digest Number 5335 Re : Roll Call

[Guest guest]

Hi everyone,

Not on here that much these days. I do try to go back and read the emails from everyone. But I am happy to say I am feeling pretty good these day. I am currently suffering from some symptoms perhaps caused by long term use of the prednisone. Since I have been feeling a little better, I've been trying to workout more at least 4 to 5 times a week. I have noticed that my bones aren't as strong as they should be.

At the moment, I am experiencing some pain from walking daily in my hips, knees and in my foot since uping the exercise. Some days I try to just ride the bike or skip the walking and just do my silver sneakers classes if the pain is more that day.

I love to walk now because it helps with the stiffness and overall health. I'm going to keep going while I am able and just rest when it becomes a little overwhelming.

I went to my eye doctor last week and he said my iritis and uevitis is gone for now and I don't have to come back for a year unless I notice some changes.

I am very thankful to God that I am doing as well as I am at the moment and I wish you all have at least a few days that are pain-free.

Shauna in atlanta.

Anyway,

From: "Neurosarcoidosis " <Neurosarcoidosis >To: Neurosarcoidosis Sent: Tue, September 14, 2010 11:25:14 AMSubject: Digest Number 5335There are 7 messages in this issue.Topics in this digest:1a. Re: Roll Call, please............. From: Connie Griffis1b. Re: Roll Call, please............. From: Rose 1c. Re: Roll Call, please............. From: rachyanne1d. Re: Roll Call, please............. From: topdat1@...1e. Re: Roll Call,

please............. From: Marla Bramer2a. Re: Bad Week From: Connie Griffis3. Re Roll Call, Attn ! From: DarleneMessages________________________________________________________________________1a. Re: Roll Call, please............. Posted by: "Connie Griffis" conaugusta@... conaugusta Date: Mon Sep 13, 2010 6:01 pm ((PDT))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]

I am so behind, but good to hear from you and so glad you are doing better, you are taking your calcium right?  MSM might help with your joint pain, I just buy it at any store.   Walking is good, even if it hurts, I can't walk very fast or far, but I really have

been pushing myself on the treadmill, Usually I can only go about 15 mins. but been pushing for 30 mins, I don't get higher then level 2, and when the legs give I go down to level 1 and keep going to 30 mins., I try to do this 3

times a week, as pushing to 30, causes more pain in my legs, but my Neuro said if you don't use it you will lose it, also I would love to lose weight, been struggling with that ever since coming off the Pred. about 6 years ago.

sorry to go on, happy to hear from you, keep up the good work. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

Hi everyone,

 

Not on here that much these days.   I do try to go back and read the emails from everyone.  But I am happy to say I am feeling pretty good these day.  I am currently suffering from some symptoms perhaps caused by long term use of the prednisone.  Since I have been feeling a little better, I've been trying to workout more at least 4 to 5 times a week.  I have noticed that my bones aren't as strong as they should be. 

At the moment, I am experiencing some pain from walking daily in my hips, knees  and in my foot since uping the exercise.  Some days I try to just ride the bike or skip the walking and just do my silver sneakers classes if the pain is more that day.  

 

I love to walk now because it helps with the stiffness and overall health.  I'm going to keep going while I am able and just rest when it becomes a little overwhelming.  

 

I went to my eye doctor last week and he said my iritis and uevitis  is gone for now and I don't have to come back for a year unless I notice some changes. 

 

I am very thankful to God that I am doing as well as I am at the moment and I wish you all have at least a few days that are pain-free. 

 

Shauna in atlanta.

 

 

 

Anyway, 

 

 

From: " Neurosarcoidosis " <Neurosarcoidosis >

To: Neurosarcoidosis Sent: Tue, September 14, 2010 11:25:14 AM

Subject: Digest Number 5335There are 7 messages in this issue.Topics in this digest:1a. Re: Roll Call, please.............   

    From: Connie Griffis1b. Re: Roll Call, please.............        From: Rose 1c. Re: Roll Call, please.............        From: rachyanne1d. Re: Roll Call, please.............        From: topdat1@...

1e. Re: Roll Call,

please.............        From: Marla Bramer2a. Re: Bad Week        From: Connie Griffis3. Re  Roll Call, Attn !        From: DarleneMessages________________________________________________________________________

1a. Re: Roll Call, please.............    Posted by: " Connie Griffis " conaugusta@... conaugusta    Date: Mon Sep 13, 2010 6:01 pm ((PDT))

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]

I just have to add, DON'T JUST BUY "ANY MSM" All vitamins are not equal. I can't tell you how many undigested vitamins I've seen myself on x-rays. Generics vitamins are crap and should be avoided along with supermarket and drug store brands. There are excellent brands that are close or just a bit more (not just MSM) but all vitamins do not break down and work the same. Before a new FDA mandate only 60% of what they claimed was in the pill had to be in it. Now supposedly it has to be what it states but the cheaper the pill the cheaper the fillers and the cheaper the fillers the less you get in your system and some fillers will only break down in a complete acid environment. Most of us are taking things to prevent our stomachs from being extremely acidic because of the meds we are taking and to avoid GER.

If your not sure of a brand e-mail me and I'll be glad to give you my advice. I also keep a wide variety of supplements in my office and have offered them to people on this board for cost and shipping. Or if you are on very expensive supplements that you buy from a store or doctor I would be glad to see what discount I can get for you. I just saved someone $400 of supplements that they take regularly. They were paying $95 a canister from their Doctor. I got the prices and got them for $62 I had to buy a dozen but she uses a canister a month and I got free shipping..

If I can help anyone else let me know but please remember that "ALL VITAMINS ARE NOT CREATED EQUAL"

Mitch

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

>

>