I'm new here

[Guest guest]

I would say something now.....you don't want to go another 3 weeks having that

feeling...

Re: I'm New Here

So, is this something I should call the DR about now? Or can it wait

until my next appt to mention it? (that's in 3 weeks)

[Guest guest]

That's true. I'll call today.

Do you think this could be slowing my weight loss though? I can't

understand why I'm not losing, except maybe for not enough exercise.

" Sonja Nunnery " <snunnery@g...> wrote:

> I would say something now.....you don't want to go another 3 weeks

having that feeling...

[Guest guest]

I know excersise has alot to do with it..I wasn't interested in excersising

until I had lost quite a bit. Now I'm trying my best to walk at least 45 minutes

to 1 hour every other night. Your body might be going into starvation

mode..that's when it's trying to hold to what it's got being that your not

putting much into it. You will find that when your able to eat your energy level

will go up and you probably will feel in the mood to excesise. It really sounds

like you need to get dialated. The normal opening into the stomach is 22mm..when

I had mine done my opening was measuring 8mm YIkes..no wonder I couldn't even

eat a slightly chunky, mushy soup.

Re: I'm New Here

That's true. I'll call today.

Do you think this could be slowing my weight loss though? I can't

understand why I'm not losing, except maybe for not enough exercise.

" Sonja Nunnery " <snunnery@g...> wrote:

> I would say something now.....you don't want to go another 3 weeks

having that feeling...

[Guest guest]

Thank you, you've been very helpful. I'm awaiting a call back from my MD.

> I know excersise has alot to do with it..I wasn't interested in

excersising until I had lost quite a bit. Now I'm trying my best to

walk at least 45 minutes to 1 hour every other night. Your body might

be going into starvation mode..that's when it's trying to hold to what

it's got being that your not putting much into it. You will find that

when your able to eat your energy level will go up and you probably

will feel in the mood to excesise. It really sounds like you need to

get dialated. The normal opening into the stomach is 22mm..when I had

mine done my opening was measuring 8mm YIkes..no wonder I couldn't

even eat a slightly chunky, mushy soup.

[Guest guest]

Just as a follow up:

I called my Dr's office yesterday and spoke to the nurse practitioner

about my problem. She said it was a little early to experience a

stricture. She suggested I go back on pureed foods for a few days and

then slowly start back on soft foods again. Then if the problem

persists, they'll schedule me for an upper GI.

I imagine the upper GI would have to be adjusted to allow for the GBS,

right? I've had them before they make you swallow a lot of liquid very

quickly. Sounds awful for a new GBS patient.

> I would definitely call your doc and tell him of your troubles...do

not wait for the next appointment. Hope all goes well...please let us

know....sherri

> I'm New Here

>

>

> Hi all!

>

> I just found this forum as I was searching for answers to my problem.

> Hopefully someone here can offer some insight.

>

> I had GBS almost 5 weeks ago. I have yet to lose even 20 lbs! I'm

> having difficulty eating solid foods and I'm exceptionally tired.

>

> I went to a support meeting in my area for bariatric patients who are

> transitioning to solid foods and metioned my problems to the

> nutritionist( I get a bubbling sensation, then pressure, feeling like

> the food is filling up in my chest. It's quite uncomfortable). All I

> got in return was " everyone's different " .

>

> I'm making a concerted effort to do some exercise, but I collapse for

> the rest of the day afterwards in exhaustion.

>

> I know I'm not getting many calories, and I have to work hard to get

> even 32oz of fluid in.

>

> Has anyone else dealt with these problems?

>

>

>

>

>

>

[Guest guest]

It's so crazy because I cry as I write this. I never thought that I would have

to get involved and need the support that I know I now need. My husband is 33

y/o and was recently diagnosed with Neurosarcoidosis. I'm trying so hard to

understand what is really going on. I'm absolutely confused. One minute he was

fine, then came a seizure in Feb 09. He was then diagnosed with this condition.

Since then, they have him on 2 different types of medication that seem to make

him worse. His condition is not getting any better now. He's constantly in the

E.R. and ready to give up. As we speak, he is in the E.R. now. Just went this

morning. He was complaining of chest pains for the last 3 days and now they

found blood clots in his lungs. I just don't know what to do. We have 7 children

and I feel lost without him. Please give me some support. I'm so afraid.

[Guest guest]

Hi Mecca,

I'm so sorry to hear about your husband- you boath have to be scared.

It sounds like they've got him on high dose prednisone? That alone can make our moods swing back and forth - it's reffered to as the roller coaster from hell.

The blood clots they can get under control with a clot buster drug--TPA (I think.)-- and when they get that issue taken care of, he'll feel a whole lot better.

I know it's hard, and it's ok for both of you to be scared--- and yet know that very few people die becuase of sarcoidosis. It can be managed, and itg will take time. Over the next weeks, they'll be doing alot of tests, and what happens is that they'll try each medication one at a time, so that if he has a problem with one, they know what is causing the problem.

It takes fseveral months to get the right combination-- and we all need different combos. I know he's probably in pain right now-- all his joints and muscles and ligaments are on high alert-- and the meds sometimes make it worse. Wehn that happens, it's time to change the medication.

We have 2 owners and 5 moderators, as well as 570+ members-- so you'll get alot of support. If you have a question-- ask it, and we'll get back to you as quickly as possible. All of us have sarc also-- so we know what he's going thru.

Here is two other sites that can help explain this disease also. WWW.sarcoidsharma.com and www.stopsarcoidosis.org.

We have a tremendous link library and Message ARCHIVES that you can browse also-- with a wealth of info. It's all free! Don' hesitate to ask questions, print out info to share witgh his docs, etc-- and let him kniow he's going to get thru this. kAnd you've both got support to make the journey easier,

Best,

Tracie

NS Co-owner/moderator

Subject: I'm new hereTo: Neurosarcoidosis Date: Sunday, March 29, 2009, 10:25 AM

It's so crazy because I cry as I write this. I never thought that I would have to get involved and need the support that I know I now need. My husband is 33 y/o and was recently diagnosed with Neurosarcoidosis. I'm trying so hard to understand what is really going on. I'm absolutely confused. One minute he was fine, then came a seizure in Feb 09. He was then diagnosed with this condition. Since then, they have him on 2 different types of medication that seem to make him worse. His condition is not getting any better now. He's constantly in the E.R. and ready to give up. As we speak, he is in the E.R. now. Just went this morning. He was complaining of chest pains for the last 3 days and now they found blood clots in his lungs. I just don't know what to do. We have 7 children and I feel lost without him. Please give me some support. I'm so afraid.

[Guest guest]

Dear Mecca, I can not imagine how frightened you both must be, and I am very sorry; but you have come to a good place for support, information, and a place to vent if you need. It does take time and the right combination of doctors and medications to get things in a better place, so hang in there. You and your family are in my prayers. Connie

Subject: I'm new hereTo: Neurosarcoidosis Date: Sunday, March 29, 2009, 1:25 PM

It's so crazy because I cry as I write this. I never thought that I would have to get involved and need the support that I know I now need. My husband is 33 y/o and was recently diagnosed with Neurosarcoidosis. I'm trying so hard to understand what is really going on. I'm absolutely confused. One minute he was fine, then came a seizure in Feb 09. He was then diagnosed with this condition. Since then, they have him on 2 different types of medication that seem to make him worse. His condition is not getting any better now. He's constantly in the E.R. and ready to give up. As we speak, he is in the E.R. now. Just went this morning. He was complaining of chest pains for the last 3 days and now they found blood clots in his lungs. I just don't know what to do. We have 7 children and I feel lost without him. Please give me some support. I'm so afraid.