RE: Questions and more questions

[Guest guest]

First off i wish you continued good health. I find that when overdoes it or does not get enough rest she has the symptoms you tell about. She is also on Cellcept but with many other meds added in. I sometimes think the medicines also contribute to the tiredness and brain fog at times as well. Take care.MattSubject: Questions and more questionsTo:

Neurosarcoidosis Date: Tuesday, August 3, 2010, 11:39 AM

hi, to everyone here

I don't post often but I do lurk frequently. I have a few questions and my docs don't seem to know the answers. I've had NS since 2007 and seem to have reached some stability in my symptoms. The only sarc med I'm on is CellCept. Here are my questions:

1)When I overdo my activity level, my symptoms seem to return. Mostly I battle fatigue, brain fog, balance problems is this typical? Once I spend a few days resting the symptoms are not as obvious.

2)Have any of you experienced a true remission of your NS? How realistic is it to expect such a response?

3)Any good ideas of how to lose the extra poundage that I owe to prednisone? I've been off of it for about a year and not matter what I do I don't seem to be able to get the scale to budge.

I hope all of you are doing well. Thanks for any thoughts you might have.

Sharon

[Guest guest]

Hello and glad to see you asking questions........I will try and answer

these the best

I can and I am sure there will be many others responding.

1. Yes, I think the fatigue, brain fog, and balance problems are problems

that most

of us have with this disease.I know I do, and am going through them right

now. And

I agree that rest does help. Unfortunately, most of us probably do not get

enough rest.

2. I know there are some on this list that have had a true remission but I

cannot say I

have. My Doctor thought I was in remission for awhile but the old Sarc

Monster showed his ugly head.

3. This last question is really good one. Prednizone works on everyone

differently. I was on prednizone for quite a while when I was first

diagnosed. I gained 60 lbs in two months and when I complained to my

Doctor, his response was that I should not be eating so much! Which was a

real joke as I could not keep food down!!!! After that, I have only been on

the normal 10 day dose of pred. For years, this did not bother me, but I

had to take it about a month ago and gained 10 pounds so I guess it is going

to be that way for me. I know there are some on the list that lost the

weight as soon as they quit taking the pred...........but not me!!! As for

losing it, I have had this extra weight for about 13 years now and have

tried to lose it. Good luck on your tries. Wish I could help more.

I am sure you will get many responses to your question s and perhaps

someone will have a recipe for loosing this weight. If so, please post it

so we can all have it. It is very hard for me because I was always skinny

and underweight, but not anymore.

Hugs,

Hugs,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Hi Sharon, As to the symptoms returning when you over due it, yes I have that too and think many would agree, you have to pace yourself, but even if I just run one too many errands, I have to come home and sleep.  So pacing, and it's not so easy.

Yes I have had a couple remissions with about a year without symptoms, problem was each time it came back, it came back worse then the last time, I have not had a remission for 10 years now.  And I know some have had remissions longer. So Yes it's possible.

As far as the weight, I know it sucks, I gained with the pred. too, and now years later I'm still fighting to get the weight off, I know some have lost weight so they would be better to answer this question, as I am still aggravated with my weight. But some day. Never give up. 

I take life one day at a time.  Hope this is a little helpful, feel free to ask anytime you have questions.  Blessings, Marla

 

hi, to everyone here

I don't post often but I do lurk frequently. I have a few questions and my docs don't seem to know the answers. I've had NS since 2007 and seem to have reached some stability in my symptoms. The only sarc med I'm on is CellCept. Here are my questions:

1)When I overdo my activity level, my symptoms seem to return. Mostly I battle fatigue, brain fog, balance problems is this typical? Once I spend a few days resting the symptoms are not as obvious.

2)Have any of you experienced a true remission of your NS? How realistic is it to expect such a response?

3)Any good ideas of how to lose the extra poundage that I owe to prednisone? I've been off of it for about a year and not matter what I do I don't seem to be able to get the scale to budge.

I hope all of you are doing well. Thanks for any thoughts you might have.

Sharon

[Guest guest]

Sharon, I was diagnosed with NS in 2001, although the symptoms started in 1999. I've been in remission & off sarc meds for 4+ years. I do believe that I'm in remission, but that doesn't mean back to normal. I still deal with the damage that was done, but there has been no progression or new symptoms. I still keep in the back of my mind that the monster could rear its ugly head again, possibly in new areas, but I just try to stay tuned in to my body's signals. I still have temporary worsening of symptoms--balance, fatigue, brain fog, breathing problems & nerve pain in my feet--when I overdo things. For one day of overdoing, it takes two to get back to my "normal." I just accept the reality & try to plan for it. I gained 90# on Pred & didn't lose much of it for the first couple of years. Then my PCP suggested I try the South Beach Diet. I don't really believe in diets as such, but I do think that sometimes you need a jumpstart. South Beach basically helps break the carb craving cycle. I followed Phase I (2 weeks of very little carbs) faithfully, then you begin to add back more (hopefully, healthier) carbs. I followed it pretty closely for the next couple of years without feeling like I was on a diet & lost 65# or so. I upped my activity some, but it was mostly reducing portion sizes & cutting back on snacks. My b/p became easily controlled (I was on 4 anti-hypertensives on Pred), blood sugar normalized & kidney function improved. Unfortunately over the past year I've gotten back in the habit of junking out. I tried the 2 weeks of Phase I again, but it just didn't seem to have the same effect, even though I've actually been more active. So I gained back about 20#. I'm still better off, but I'm so annoyed at myself. One of the things I did with the South Beach changes was only eat junk if I really wanted it; I didn't eat a stale donut just because it was laying there. But if I really wanted a chocolate eclair or whatever, I ate it, enjoyed it, and had no regrets! For some reason, I got back into the habit of eating stuff even when I really didn't want it--bored, felt entitled, who knows--and gained weight again. It's mostly in the middle, that "bad fat." When my old swimsuit sagged & bagged beyond use, I actually bought a maternity suit! The stores were out of most of their suits, at least any I could wear, so I tried the maternity dept. at Target and BINGO! It's actually very comfortable with good support. (For those of you who have seen my Facebook photos at the beach, that is the old saggy suit.)

I don't know if this was of any use to you, but that's my story & I'm sticking to it!

Ramblin' RoseModerator

"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 > Date: Tue, 3 Aug 2010 15:39:22 +0000> Subject: Questions and more questions> > hi, to everyone here> I don't post often but I do lurk frequently. I have a few questions and my docs don't seem to know the answers. I've had NS since 2007 and seem to have reached some stability in my symptoms. The only sarc med I'm on is CellCept. Here are my questions:> > 1)When I overdo my activity level, my symptoms seem to return. Mostly I battle fatigue, brain fog, balance problems is this typical? Once I spend a few days resting the symptoms are not as obvious.> > 2)Have any of you experienced a true remission of your NS? How realistic is it to expect such a response?> > 3)Any good ideas of how to lose the extra poundage that I owe to prednisone? I've been off of it for about a year and not matter what I do I don't seem to be able to get the scale to budge.> > I hope all of you are doing well. Thanks for any thoughts you might have.> > Sharon> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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 > >