Checking in

[Guest guest]

Vicky

I am glad you were not hurt worse and on the mend. I hope you

enjoyed those plums!

As far as how much you can eat...does the portion change during the

month? I found that it changes almost from week to week depending

on hormone changes and whether they have their party hats on!

Sometimes I have to contain my portion sizes other times I have to

make sure I eat enough to maintain my weight without losing.

I am a bodybuilder " wannabe " and train 4 times a week. Since my body

fat fell to 14% I burn more calories then the average person just

watching TV. Probably the best gift I gave to myself was the

discipline to train and build muscle (The " fat burning engines " .)

It just seems I have no struggles with maintaining. I do realize I

am only 2 years post and might have greater struggles in the future

but I feel prepared to meet them head on if needed.

God bless!

Carol G

> Good morning comrades!

>

> I haven't posted in awhile. My arm has been immobile because LIKE

A

> DUMMY I put a ladder against the fence and climbed up to pick

plums.

> I reached up too high and flipped the ladder over into my

neighbors

> back yard, which is lower than mine, taking a 12 foot tumble.

Man,

> am I banged up! I have a hematoma from my left shoulder to

halfway

> down to my wrist...it's gruesome!

>

> Ahh...the things we do now that we're not so fat!! This is the

same

> shoulder I wrenched skiing for the first time a couple of months

ago.

>

> The last two days have been wicked. I have been starving! And I

> have been eating. Not " bad " stuff, but eating nevertheless. I have

> gained 3 pounds. I don't know why I feel so ravenous, and frankly

it

> is scary how much I can eat. It's apparent I no longer have a

small

> pouch to rely on and will have to depend solely on good habits to

> lose any more weight.

>

> I was eating almost nothing, and still maintaining at 230. My

> husband was getting concerned and scared at how little I

ingested.

> But now that I'm eating more, I'm gaining. What to do?

>

> BTW what ever happened to the reunion idea?

>

> Smiles,

>

> Vicki A.

[Guest guest]

I think the compulsive eating comes from being housebound, bored and

unable to do anything physical without a great deal of pain. I can't

go to the gym. Can't use my arm at all...can't sleep, drive. It

should be better once the pain subsides somewhat. But this was a bad

one...it happened almost 2 weeks ago. Dr. said I just have to mend.

I thought about getting pain meds, but I can't trust how they will

affect me after my drinking episode. Thanks for your thoughts. I

just have to try to keep my snout out of the trough until I get back

to my routine. It helps to vent here.

Vicki A.

> > Good morning comrades!

> >

> > I haven't posted in awhile. My arm has been immobile because

LIKE

> A

> > DUMMY I put a ladder against the fence and climbed up to pick

> plums.

> > I reached up too high and flipped the ladder over into my

> neighbors

> > back yard, which is lower than mine, taking a 12 foot tumble.

> Man,

> > am I banged up! I have a hematoma from my left shoulder to

> halfway

> > down to my wrist...it's gruesome!

> >

> > Ahh...the things we do now that we're not so fat!! This is the

> same

> > shoulder I wrenched skiing for the first time a couple of months

> ago.

> >

> > The last two days have been wicked. I have been starving! And I

> > have been eating. Not " bad " stuff, but eating nevertheless. I

have

> > gained 3 pounds. I don't know why I feel so ravenous, and

frankly

> it

> > is scary how much I can eat. It's apparent I no longer have a

> small

> > pouch to rely on and will have to depend solely on good habits to

> > lose any more weight.

> >

> > I was eating almost nothing, and still maintaining at 230. My

> > husband was getting concerned and scared at how little I

> ingested.

> > But now that I'm eating more, I'm gaining. What to do?

> >

> > BTW what ever happened to the reunion idea?

> >

> > Smiles,

> >

> > Vicki A.

[Guest guest]

If all else fails, drink protein shakes and more water. That way your

pouch will be full and you'll feel satieted most of the time.

Plus, the protein does help you mend faster, I've experiened this

myself after having gall bladder surgery.

diana m

> > > Good morning comrades!

> > >

> > > I haven't posted in awhile. My arm has been immobile because

> LIKE

> > A

> > > DUMMY I put a ladder against the fence and climbed up to pick

> > plums.

> > > I reached up too high and flipped the ladder over into my

> > neighbors

> > > back yard, which is lower than mine, taking a 12 foot tumble.

> > Man,

> > > am I banged up! I have a hematoma from my left shoulder to

> > halfway

> > > down to my wrist...it's gruesome!

> > >

> > > Ahh...the things we do now that we're not so fat!! This is the

> > same

> > > shoulder I wrenched skiing for the first time a couple of

months

> > ago.

> > >

> > > The last two days have been wicked. I have been starving! And

I

> > > have been eating. Not " bad " stuff, but eating nevertheless. I

> have

> > > gained 3 pounds. I don't know why I feel so ravenous, and

> frankly

> > it

> > > is scary how much I can eat. It's apparent I no longer have a

> > small

> > > pouch to rely on and will have to depend solely on good habits

to

> > > lose any more weight.

> > >

> > > I was eating almost nothing, and still maintaining at 230. My

> > > husband was getting concerned and scared at how little I

> > ingested.

> > > But now that I'm eating more, I'm gaining. What to do?

> > >

> > > BTW what ever happened to the reunion idea?

> > >

> > > Smiles,

> > >

> > > Vicki A.

[Guest guest]

0

HELEN

Subject: Checking InTo: "Sarcoidosis" <neurosarcoidosis >Date: Friday, January 30, 2009, 4:52 PM

Hi everyone,

It is time for a roll call so please check in and let us know what is going on in your lives ........with approx 550 members, we should never have a slow day on the list....... As for me, I have been fighting a sinus infection with all this weather. We had snow flurries on Sunday, got about 6 inches of snow on Monday, another 6 inches on Tuesday and then about 1 inch last night....... ...so we have about 13 inches of snow and it is bitterly cold. I LOVE my snow, so I am not complaining, but lots of people do not like snow, including my hubby. I have always loved it but am afraid to get out in it much anymore for fear of getting sick again......

I would like to say hello to the new members. I have tried to welcome them, but I know I missed several. Same thing with the birthdays... ......hope you all had nice ones. I have been having lots of trouble with my computer.... ... it has been a really good one, but it is 5 1/2 years old and it keeps crashing and losing some of my files. I am going to have to shop around for a new one. I hate that because I really like my old one.

Ok, guys and gals, I have rambled on and on, so now it is your turn! Please do check in and let us know how you are.

With love to all,

Darlene

NS Co-Owner/Moderator

[Guest guest]

JACKIE I AM GLAD YOU HAD A GOOD DAY.AS YOUR DAY SO MAY YOUR STRENGYH BE

HELEN

Subject: Re: Checking InTo: Neurosarcoidosis Date: Friday, January 30, 2009, 8:02 PM

Hello to all. I have been in and out of the hospt. ER for the last 3 weeks. I haven't eaten at all and kept it down. Liquids are the same way. I have lost almost twenty pounds. Today is the first day knock on wood that I haven't been sick. Maybe it is gone???? The doctors never found out what it is. I am afraid I may have gotten into the peanut butter thingy. Who knows.

Other than that all is well. Cold here no new snow but the old is looking really dirty. That usually means that it is getting close to going away. I hope so.

Hugs to all and my best wishes too. You are all in my prayers.

Welcome to the new member.

Jackie

Checking In

Hi everyone,

It is time for a roll call so please check in and let us know what is going on in your lives ........with approx 550 members, we should never have a slow day on the list....... As for me, I have been fighting a sinus infection with all this weather. We had snow flurries on Sunday, got about 6 inches of snow on Monday, another 6 inches on Tuesday and then about 1 inch last night....... ...so we have about 13 inches of snow and it is bitterly cold. I LOVE my snow, so I am not complaining, but lots of people do not like snow, including my hubby. I have always loved it but am afraid to get out in it much anymore for fear of getting sick again......

I would like to say hello to the new members. I have tried to welcome them, but I know I missed several. Same thing with the birthdays... ......hope you all had nice ones. I have been having lots of trouble with my computer.... ... it has been a really good one, but it is 5 1/2 years old and it keeps crashing and losing some of my files. I am going to have to shop around for a new one. I hate that because I really like my old one.

Ok, guys and gals, I have rambled on and on, so now it is your turn! Please do check in and let us know how you are.

With love to all,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Hi Everyone,

I have NS in the brain and spinal cord-Diagnosed in Oct, 2008. Prednisone 60mg daily since diagnosed have shrunk the brain and spinal lesions somewhat. They are calling them lesions, because both are in and not on the brain and spinal cord, they cannot biopsy for a definitive diagnosis. I am being treated at the mayo clinic in Rochester, Mn. They continually check for M.S. and Lymphoma, which has always come up negative. I am ambulatory, have some trouble with balance, for which I go to Physical Therapy. Continue to have decreased sensation from left foot up to breast line front and back. Also have decreased sensation right foot up to mid calf. I have the sensation of when I need to use the bathroom, but have no sensation of actually completing the act.I was having trouble with word find and memory before I was diagnosed, but that has cleared since I was started on Prednisone.

Battling now with muscle weakness which they say is due to the Steroids. Increased appepite and fluid retention are also issues. I only have one kidney and the steroids are affecting the function somewhat. The Mayo was unable to give me a prognosis of the course of my disease, just stating," we don't treat enough of this type to give you that answer." So, my goal is to research everything I can on this disease to help my odds.

I am very interested in the patient conference being held in March.

With keep everyone in my thoughts and prayers, as we journey on down this road that life has presented us with.

I am fairly new at this computer thing, so bear with me-Thank

To: Sarcoidosis <neurosarcoidosis >Sent: Friday, January 30, 2009 4:52:47 PMSubject: Checking In

Hi everyone,

It is time for a roll call so please check in and let us know what is going on in your lives ........with approx 550 members, we should never have a slow day on the list....... As for me, I have been fighting a sinus infection with all this weather. We had snow flurries on Sunday, got about 6 inches of snow on Monday, another 6 inches on Tuesday and then about 1 inch last night....... ...so we have about 13 inches of snow and it is bitterly cold. I LOVE my snow, so I am not complaining, but lots of people do not like snow, including my hubby. I have always loved it but am afraid to get out in it much anymore for fear of getting sick again......

I would like to say hello to the new members. I have tried to welcome them, but I know I missed several. Same thing with the birthdays... ......hope you all had nice ones. I have been having lots of trouble with my computer.... ... it has been a really good one, but it is 5 1/2 years old and it keeps crashing and losing some of my files. I am going to have to shop around for a new one. I hate that because I really like my old one.

Ok, guys and gals, I have rambled on and on, so now it is your turn! Please do check in and let us know how you are.

With love to all,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Hi Sarcoid group,

I am just checking. I too have been reading the daily emails from the group. I am sorry for those who are not feeling to well. I am feeling pretty good at the moment thank God! I went for two of my checkups with my pulumanary physician and eye doctors. Good news! All is quiet now. I am feeling pretty good and trying to get off some of this weight that I gained over the last year. It doesn't seem to want to come off a quickly as it normally does but I am going to keep working at it.

I had to back of from my silver sneakers program because I hurt my rotator cups while doing some resistance training. So it has been killing me to lie on my shoulders and lift my arms. I guess I overdid it. So I am just going to walk on the treadmill until they get better. I worked out on thursday and I must say I had a lot of energy that day and someone even asked me why are you so chipper to day. I laughed and said I am aren't I. I do feel better when I work out even just wallking on the treadmill. I don't feel as stiff and have more energy which is something I don't normally have.

Anyway, I hope a can keep feel pretty good so I can get these pounds off. At least a few of them anyway. I hope you all feel better and keep smiling even through the bad days.

Just a note to check in with you guys. Take care.

Shauna in Alt.

[Guest guest]

Hi, Helen. I just read your message. I'm sorry that you were so sick, but I have some concerns about the diagnosis. Maybe I just didn't have enough information. Pancreatitis (acute or chronic) usually causes severe abdominal pain, along with vomiting & constitutional symptoms (weakness, dizziness, etc.). I've never heard of it causing low platelets or being treated with Prednisone. Were you seen by a gastroenterologist? If you are getting better, great. But if you aren't feeling much better, you need further evaluation (IMHO!).

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

To: Neurosarcoidosis From: hmwalker9@...Date: Fri, 30 Jan 2009 15:20:26 -0800Subject: Re: Checking In

Hi Darlene and the group,

I was recently hospitalized.I GOT EXTREMELY DIZZY IN BED AND NAUSEATED.I WAS TOLD THAT MY BLOOD PLATELETS WERE IN THE 30,000.THE NURSE ASKED IF I HAD CANCER BECAUSE OF THE LOW PLATELETS.I HAVE SARCOIDOSIS IN THE EYES,LUNGS,BRAIN AND SARCOID ARTHRITIS.I LEFT THE HOSPITAL WITH A DIAGNOSIS OF ACUTE PANCRITITUS.I was placed on prenisone again.It raised my platelets.I am still using a walking since being hospitalized in January.Be Blessed AS YOUR DAY SO SHALL YOUR STRENGTH BE.

HELEN

Subject: Checking InTo: "Sarcoidosis" <neurosarcoidosis >Date: Friday, January 30, 2009, 4:52 PM

Hi everyone,

It is time for a roll call so please check in and let us know what is going on in your lives ........with approx 550 members, we should never have a slow day on the list....... As for me, I have been fighting a sinus infection with all this weather. We had snow flurries on Sunday, got about 6 inches of snow on Monday, another 6 inches on Tuesday and then about 1 inch last night....... ...so we have about 13 inches of snow and it is bitterly cold. I LOVE my snow, so I am not complaining, but lots of people do not like snow, including my hubby. I have always loved it but am afraid to get out in it much anymore for fear of getting sick again......

I would like to say hello to the new members. I have tried to welcome them, but I know I missed several. Same thing with the birthdays... ......hope you all had nice ones. I have been having lots of trouble with my computer.... ... it has been a really good one, but it is 5 1/2 years old and it keeps crashing and losing some of my files. I am going to have to shop around for a new one. I hate that because I really like my old one.

Ok, guys and gals, I have rambled on and on, so now it is your turn! Please do check in and let us know how you are.

With love to all,

Darlene

NS Co-Owner/Moderator

Windows Live™ Hotmail®:…more than just e-mail. Check it out.

[Guest guest]

Cherisse, I'm pasting one of Tracie's excellent summaries of both possible causes & the many treatment options. Most of us require a combination of drugs, especially to reduce or stop the Pred altogether. Maybe you can print out this info & that from arthritis.org & discuss it with your docs.

There is some theories that state we probably ended up with a virus - possibly a rogue tb strain. Since it was viral, it went untreated, and somehow it turned on our immune systems, and now they don't shut down.

What they do know is we produce to much of the TNF-a cells. The immune system sends out the white cells to fight infection, then when that crisis is over, the immune system sends out TNF-a cells, to clear out the white cells. Then it sends out TNF-b cells, to clear out the TNF-a and stragglers-- and we're back to "normal." Only we don't clear them out, we build one upon the other, and they calcify forming granulomas.

There is also speculation that we have some "mycobacterium" that started this-- and there are hundreds of varieties of mycobac. However, we don't all test positive for mycobac-- so again it's hit and miss.

They are now finding a huge correlation between people exposed to alot of exposures to viruses (medical workers, teachers, clergy, grocery clerks...) and pesticides, agriculture dusts and deserts- many of the vets that spent time in Iran and Iraq are having problems, as are alot of the people who worked at the Twin Towers -- so there again, you've got dust, ashes, and chemicals, etc.

They used to think this was a "rare" disease-- but it has been misdiagnosed or ignored in many- as our docs still think it's benign-- and will burn itself out.

What's interesting is that if you can forego the steroids-- prednisones, then it stands a higher chance of burning itself out. But for those of us where every sinus and allergy season meant we lived on SoluMedrol packs, and prednisone- we were up against the wall from the getgo.

Add not being able to breath, to think, walk, multi-task-- on and on.. and we end up on high dose steroids. We get the symptoms calmed down, we wean off it- and we're good for awhile. Then it comes back, maybe as sarcoid-induced arthritis (which will be misdiagnosed as arthritis, or fibromyalgia, or chronic fatigue) and we may be short of breath and need a nap following our morning shower, and we may have iritis (inflammatio of the iris of the eye) and we may have leg or extremity weakness-- and we're off and running. They want to put you back on pred-- the magic bullet, but that doesn't stop the progression. It just masks the symptoms.

When it comes back, or is effecting the CNS or PNS (Central or Peripheral Nervous System) then you have to get them to look at steroid sparing meds-- the DMARDS. (Disease Modifying Anti-rheumatic drugs), the anti-inflammatories, the Biologicals, BRM's-- biological Response Modifiers-- ie. Enbrel, Humira, Remicade, Cellcept-- and see what combo is going to work.

The site www.arthritis.org has a fantastic drug section that explains all these meds, and what they do and the side effects-- it is the best $20 a yr I spend to get the magazine ARTHRITIS TODAY. That way I have the annual copy of the book. There is a link in the library also.

Anyway, I know there is so much more we can share with you, but my brain just frosted over, so I'll go at it again later..

Take care,

Tracie

NS Co-owner/moderator

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

To: Neurosarcoidosis From: cherisse_simon@...Date: Sat, 31 Jan 2009 07:41:47 +0000Subject: Checking In

Hello everyone just a little check note.

The last time I saw my neurologist was the 2nd of December, a he decided to drop my steroids to 7.5 mg, down from 10 mg. When I did drop the steroids I was experiencing dizzy spells and headaches which I hadn't had in a while. But Im really scared because this year it will be 2 years since I have been on steroids, and sometimes it makes me think that maybe I might be on them forever or even life. I wish this monster will go away

Has anyone lost any weight whilst on steroids?

From Cherisse

Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out.

[Guest guest]

Hi Rose,

I got dizzy in April when I got up to use the restroom.Immediately.I felt as if there was no foundation under my feet nor anything to hold on to.My husband said I gagged and threw up for hours.I went back to bed and woke up five hours later doing the same thing.I was dehydrated ,my blood pressure was high when i reached the emergency room.I was there for six days.Test that was taken revealed that I had neursarcodosis.I already had it in my lungs and eyes.as well as sarcoid arthritisl My neurologist told me my platelets were low earlier last year.I been to West Cancer Clinic several times.I had a bone marrow test done to rule out Leukemia.I turned over in bed Jan,2nd and got dizzy again with the same symptoms.I was hospitalized and diagnosed with acute pancreatitis.I was given steroids through my IV.My platelet count went up.My pcp doctor was baffled because i didn't have any pain.I have not been treated for the neurosarcoidosis

because of my low platelets.I have been weak and off balance since being hospitalized in January.I take seizure meds and med for vertigo.

HELEN

Subject: Checking InTo: "Sarcoidosis" <neurosarcoidosis@ yahoogroups. com>Date: Friday, January 30, 2009, 4:52 PM

Hi everyone,

It is time for a roll call so please check in and let us know what is going on in your lives ........with approx 550 members, we should never have a slow day on the list....... As for me, I have been fighting a sinus infection with all this weather. We had snow flurries on Sunday, got about 6 inches of snow on Monday, another 6 inches on Tuesday and then about 1 inch last night....... ...so we have about 13 inches of snow and it is bitterly cold. I LOVE my snow, so I am not complaining, but lots of people do not like snow, including my hubby. I have always loved it but am afraid to get out in it much anymore for fear of getting sick again......

I would like to say hello to the new members. I have tried to welcome them, but I know I missed several. Same thing with the birthdays... ......hope you all had nice ones. I have been having lots of trouble with my computer.... ... it has been a really good one, but it is 5 1/2 years old and it keeps crashing and losing some of my files. I am going to have to shop around for a new one. I hate that because I really like my old one.

Ok, guys and gals, I have rambled on and on, so now it is your turn! Please do check in and let us know how you are.

With love to all,

Darlene

NS Co-Owner/Moderator

Windows Live™ Hotmail®:…more than just e-mail. Check it out.

[Guest guest]

HELLO TO ALL, HAPPY BELATED BIRTHDAYS TO

THOSE I HAVE MISSED!!! WELL I JUST HAD MY FIRST BOUGHT OF THE SARC

MONSTER THAT REALLY KNOCKED ME DOWN HARD!!! I HAD SYMPTOMS OF A STROKE

ENDED UP IN THE HOSPITAL FOR A WEEK . THEY DID EVERYTHING BUT ANAL

PROBED ME LOL!! I HAD ABOUT 6 MRIS 4 CAT SCANS , EKG, ECOCARDIOGRAM

WITH BUBBLE STUDY, CRANIAL ANGIOGRAM,SPINAL TAP, TEE (WHICH IS REALLY

FUN SWALLOWING A CAMERA,) CAROTID SONOGRAM, EEG AND THEN A 24 HOUR EEG

WHICH AS MY HUSBAND SAID LOOKED LIKE A DISPLACED PERSON WITH AN UPSIDE

DOWN EASTER BASKET!!! IF I EVER FIGURE OUT HOW TO PUT THE PICTURE ON

THE

WEB SITE I WILL. NOT MUCH PRIVACY WITH THE WHOLE EEG I AM SURE I WILL

BE

ON U-TUBE FOR MY POTTY PORN LOL!! ANYWAY ON A SERIOUS NOTE THAT SUCKED

AND THEY NEVER FOUND ANY THING WRONG EXCEPT THEY GET THIS THEY THINK

IT

IS THE NS IN THE BRAIN. WELL MY HUBBY HAD ,HAD ENOUGH OF ME GETTING

POKED AND PRODED THAT HE AGAINST MEDICAL ADVICE TOOK ME OUT OF THERE.

(BESIDES I COULD NOT STAND BEING AWAY FROM MY KIDS AGES 11,12,AND

16.ANY MORE!!! MY HUSBAND DAVID CALLED CLEVELAND CLINIC AND THE DOC

THERE SAID GOOD THAT HE GOT ME OUT OF THERE WHEN HE DID!! SHOULD HEAR

ABOUT THE REMICADE INFUSIONS BY THE END OF THIS WEEK!! ANY THING I

MIGHT

NEED TO KNOW BEFORE I GO THIS ROUTE? I KNOW THIS IS A SLOW MOVING

DISEASE BUT I WAS JUST DIAGNOSED IN AUG 08 AND AM 38 YEARS OLD AND

HAVING ALOT OF TROUBLE RATHER QUICKLY!! HOPE EVERYONE IS FEELING

BETTER.

I KNOW I AM SINCE I AM HOME THERE IS KNOW PLACE LIKE HOME!! BLESSING

TO

ALL ,

BARB

--- End forwarded message ---

[Guest guest]

HI Marla, I will be going back to NJH on the 29 of April and would love to meet up with u again if u are going to be around. Hope all is well with you, Matt in SeattleHi Cherisse, That's one of the big questions, losing the prednisone weight? I just read a post that said she lost all her steroid wt. that is awesome, I think many of us struggle with this, I have lost some of the weight, but I am trying, I have only lost like 5, only to gain back 10. But then I had a liver Bx and was told I had a "fatty liver", and needed to lose "10% of my body wt. in 6 months" Well it's been 5 months and I've only lost 1/2 the weight. It is a difficult thing to do. I also think it is harder, as we find ourselves home more, which at least for me, means grazing all day, and that's not on grass! It's important to learn to live with the Sarcoid, that means life style changes, job change or maybe no job, this is difficult if we have worked all our life It is better to learn to live with it, not that we shouldn't be treating it, yes, anyway to make life easier is important, and that is living with it too. Blessings, Marla On Sat, Jan 31, 2009 at 9:41 AM, cherisse simon <cherisse_simon (AT) yahoo (DOT) co.uk> wrote:Hello everyone just a little check note.The last time I saw my neurologist was the 2nd of December, a he decided to drop my steroids to 7.5 mg, down from 10 mg. When I did drop the steroids I was experiencing dizzy spells and headaches which I hadn't had in a while. But Im really scared because this year it will be 2 years since I have been on steroids, and sometimes it makes me think that maybe I might be on them forever or even life. I wish this monster will go awayHas anyone lost any weight whilst on steroids?From Cherisse-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

[Guest guest]

Hi Jackie,

I have been having problems with nausea and vomiting.....I have been through several tests through gasterontology (sp?) . I have had to drive 2hrs in each direction for each test with the specialist. She thinks its dyspepsia(heartburn), but I really can't understand that.

My own gastro was stumped too. He diagnosed gastroparesis. All I know is I only eat oatmeal and cereal with not too much soy milk. Anything with sucrose makes it worse.

I just hope you don't have these symptoms long term and it gets better for you. I know what you are going through...

Hugs,

Debbie TCo-moderator

Subject: Re: Checking InTo: Neurosarcoidosis Date: Friday, January 30, 2009, 9:02 PM

Hello to all. I have been in and out of the hospt. ER for the last 3 weeks. I haven't eaten at all and kept it down. Liquids are the same way. I have lost almost twenty pounds. Today is the first day knock on wood that I haven't been sick. Maybe it is gone???? The doctors never found out what it is. I am afraid I may have gotten into the peanut butter thingy. Who knows.

Other than that all is well. Cold here no new snow but the old is looking really dirty. That usually means that it is getting close to going away. I hope so.

Hugs to all and my best wishes too. You are all in my prayers.

Welcome to the new member.

Jackie

Checking In

Hi everyone,

It is time for a roll call so please check in and let us know what is going on in your lives ........with approx 550 members, we should never have a slow day on the list....... As for me, I have been fighting a sinus infection with all this weather. We had snow flurries on Sunday, got about 6 inches of snow on Monday, another 6 inches on Tuesday and then about 1 inch last night....... ...so we have about 13 inches of snow and it is bitterly cold. I LOVE my snow, so I am not complaining, but lots of people do not like snow, including my hubby. I have always loved it but am afraid to get out in it much anymore for fear of getting sick again......

I would like to say hello to the new members. I have tried to welcome them, but I know I missed several. Same thing with the birthdays... ......hope you all had nice ones. I have been having lots of trouble with my computer.... ... it has been a really good one, but it is 5 1/2 years old and it keeps crashing and losing some of my files. I am going to have to shop around for a new one. I hate that because I really like my old one.

Ok, guys and gals, I have rambled on and on, so now it is your turn! Please do check in and let us know how you are.

With love to all,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Hi Debbie

Well I got a chance to see my own DR. I now have an appt. with a surgeon for Tuesday. I still haven't eaten or drank and kept it down. Popsicles seem to help but I am really sick of them. lol Wish I had a fudgecicle.

I don't know exactly what the dr's are looking for. GERD and the big C seems to come up all the time with them. Gosh this is scary. But hey, I made it this far with the old Sarc Monster I can do this. I need to live one day at a time right now. So I am spoiling myself and my grandchildren. We never know what happens from one day to another. I figure if the doctors were really worried they would have put me in the hospital right away. So on that note I will keep an optimistic outlook.

You take care of you and remember God doesn't give us more than we can handle. I have 2 children to prove that. *wink*

Jackie

Checking In

Hi everyone,

It is time for a roll call so please check in and let us know what is going on in your lives ........with approx 550 members, we should never have a slow day on the list....... As for me, I have been fighting a sinus infection with all this weather. We had snow flurries on Sunday, got about 6 inches of snow on Monday, another 6 inches on Tuesday and then about 1 inch last night....... ...so we have about 13 inches of snow and it is bitterly cold. I LOVE my snow, so I am not complaining, but lots of people do not like snow, including my hubby. I have always loved it but am afraid to get out in it much anymore for fear of getting sick again......

I would like to say hello to the new members. I have tried to welcome them, but I know I missed several. Same thing with the birthdays... ......hope you all had nice ones. I have been having lots of trouble with my computer.... ... it has been a really good one, but it is 5 1/2 years old and it keeps crashing and losing some of my files. I am going to have to shop around for a new one. I hate that because I really like my old one.

Ok, guys and gals, I have rambled on and on, so now it is your turn! Please do check in and let us know how you are.

With love to all,

Darlene

NS Co-Owner/Moderator

[Guest guest]

Hi Matt, I should be here, at this point of no plans as na is still in school then, so let me know when you are passing through. Love to see you, Marla

HI Marla, I will be going back to NJH on the 29 of April and would love to meet up with u again if u are going to be around. Hope all is well with you, Matt in Seattle

Hi Cherisse, That's one of the big questions, losing the prednisone weight? I just

read a post that said she lost all her steroid wt. that is awesome, I think many of us struggle with this, I have lost some of the weight, but I am trying, I have only lost like 5, only to gain back 10.

But then I had a liver Bx and was told I had a " fatty liver " , and needed to lose " 10% of my body wt. in 6 months " Well it's been 5 months and I've only lost 1/2 the weight. It is a difficult thing to do. I also think

it is harder, as we find ourselves home more, which at least for me, means grazing all day, and that's not on grass! It's important to learn to live with the Sarcoid, that means life style changes,

job change or maybe no job, this is difficult if we have worked all our life It is better to learn to live with it, not that we shouldn't be treating it, yes, anyway to make life easier is important, and that is

living with it too. Blessings, Marla

Hello everyone just a little check note.The last time I saw my neurologist was the 2nd of December, a he decided to drop my steroids to 7.5 mg, down from 10 mg. When I did drop the steroids I was experiencing dizzy spells and headaches which I hadn't had in a while. But Im really scared because this year it will be 2 years since I have been on steroids, and sometimes it makes me think that maybe I might be on them forever or even life. I wish this monster will go away

Has anyone lost any weight whilst on steroids?From Cherisse

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...

www.marykay.com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;

May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

[Guest guest]

Will do, have my appt on the 29 of April thru may 1 so hope to see u around then, MattHi Matt, I should be here, at this point of no plans as na is still in school then, so let me know when you are passing through. Love to see you, Marla On Sat, Feb 7, 2009 at 1:52 AM, Mathew Cohen <chapmac (AT) gmail (DOT) com> wrote:HI Marla, I will be going back to NJH on the 29 of April and would love to meet up with u again if u are going to be around. Hope all is well with you, Matt in SeattleHi Cherisse, That's one of the big questions, losing the prednisone weight? I just read a post that said she lost all her steroid wt. that is awesome, I think many of us struggle with this, I have lost some of the weight, but I am trying, I have only lost like 5, only to gain back 10. But then I had a liver Bx and was told I had a "fatty liver", and needed to lose "10% of my body wt. in 6 months" Well it's been 5 months and I've only lost 1/2 the weight. It is a difficult thing to do. I also think it is harder, as we find ourselves home more, which at least for me, means grazing all day, and that's not on grass! It's important to learn to live with the Sarcoid, that means life style changes, job change or maybe no job, this is difficult if we have worked all our life It is better to learn to live with it, not that we shouldn't be treating it, yes, anyway to make life easier is important, and that is living with it too. Blessings, Marla On Sat, Jan 31, 2009 at 9:41 AM, cherisse simon <cherisse_simon (AT) yahoo (DOT) co.uk> wrote:Hello everyone just a little check note.The last time I saw my neurologist was the 2nd of December, a he decided to drop my steroids to 7.5 mg, down from 10 mg. When I did drop the steroids I was experiencing dizzy spells and headaches which I hadn't had in a while. But Im really scared because this year it will be 2 years since I have been on steroids, and sometimes it makes me think that maybe I might be on them forever or even life. I wish this monster will go awayHas anyone lost any weight whilst on steroids?From Cherisse-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

[Guest guest]

Don''t feel bad about no checking in .....sometimes its unavoidable. We had a big ice storm and lost elec. for 5 days. I don't know how you did it, feeling so cold and all. Gets through your bones! Hope you are feeling pain frree,

Debbie

Subject: checking inTo: "NS" <neurosarcoidosis >Date: Monday, February 9, 2009, 10:39 PM

I'm sorry I haven't been around much, life is just going too fast, and sometimes too slow. I've been trying to stay up with birthdays and new members, if I missed you, Happy Birthday and welcome. Our furnace went out Friday at about 5:15 no kidding, and my husband is one that does everything himself, so we had almost no heat until today around 6pm. We had 2 space heaters, and I have 2 electric throw blankets and an electric on my bed, so was all wrapped up and sat in front of the space heater, but still cold, (except for the occasional hot flashes, never thought I would enjoy one of those,LOLThis really zapped me of energy, The pain was not as bad as feared. I am on Remicade now, finally after that year of fighting, so I get my infusionevery 5 weeks, and for the most part I am doing really good. I have been trying to get caught up with my business as I have to put

the taxes together \now, so we can get them to the tax person, since I am terrible at paper work, this time of year is not fun for me, I have to put the whole year together in just a few weeks, my own fault but not fun. So I haven't been around to help out and I'm sorry, I still do not have my tax information ready, so will not be around much still, but know that I keep you all in my thoughts and prayers, and wish I could be here more. This group is so blessed to have so many wonderful people here to help each other. And Tracie is the glue, even when she says she's tired she still checks in and getsback to you all, we are blessed to have you Tracie. Good to hear Rose back too, you were missed! And good to hear from you too Ron, I hope some day to meet you all! Take care and God Bless, I hope you have a warm, as I don't take that for granted anymore, and pain free day, week and

forever, Marla -- May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

[Guest guest]

Hi Everyone,

checking in I was in land with my husband at our daughter and son-

in-laws. We took care of our four yr old granddaughter /arinna. The

road trip was great just the two of us. I had half the bed open in

the back of my van and was able to stretch out. At the time I was

having horrible fibromyalgia pain in my legs and feet. The house had

many stairs so I would cry when I went to bed. I think it is also the

sarc. The sarc started in my jaw and went to my brain. That was in

1989 and since than the list of diagnosis' has added up. Trigeminal

neuralgia, Stroke, Diabetes Insipidus, Panhypopituitarism,

hypothyroidism, adrenal insufficiency, (list won the most concerning,

I can go into an adrenal crisis in seconds of stress good or bad and

end up in the hospital to prevent a coma, the steroids are keeping me

alive) steroid dependent, hyponatremia, (low sodium) dry eye

syndrome, fibromyalgia, high blood pressure, inconintence (both), and

now micobacterium chelonae. Today I am pain free?????? and I am

enjoying the day! For those who are interested I want to tell what

my daughter carolyn made for me. She took and ordinary pocket folder

with clips in center for papers. On the front of folder using

colorful labels, it says 911 next the hynatremia next dob full name

next phone #'s and emergency contact my husband. second neice. next

where I am a patient, med # and brief note stating, I may not be

capable of making decisions. These are all seperated labels all

different colors. other side of from of folder more labels all with

my meds and dosages. on pocket front labels with all of docs names

and speciality and last two insurance info. next back of folder

inside labels listing all diseases, and list of allergies and last

one non-smoker and no alcohol. the clips have three sheets each

inclosed in plastic covers first is letter from doctor stating how I

should be treated if I end up in a different er the second letter is

from the doc stating that I am carrying syringes for er use if I

should go into adrenal crisis! and also that I need my electric

scooter for mobility. the third sheet is my living will. I have had

more compliments from doctors and er staff and always thank me for

having it. I thank my daughter she has been a life saver for three

occasions in er. I haven't been writing because I was in so much pain

all i could do was crumble up with ice packs and wait for the meds to

do something. Thanks for listening and for the call for a members to

check in.

banna

>

> Don''t feel bad about no checking in .....sometimes its

unavoidable.  We had a big ice storm and lost elec. for 5 days.  I

don't know how you did it, feeling so cold and all.   Gets through

your bones!  Hope you are feeling pain frree,

> Debbie

>

[Guest guest]

That is such a neat Idea. I think I will do one of those folders myself. I do have all my meds typed and laminated in my wallet. I carry it with me so when the dr.s ask I just hand them that. I also want to put a card in my wallet saying what I have so the officers (when I get stopped *wink*) or paramedics will know I am not just faking or drunk. Sorry I keep going back to the warped humor I have. But thank you for the idea I think it is great.

Also you hang in there and know I think of you as well as you are in my prayers. I have such a long list at night I have to go to bed an hour before I go to sleep. It is worth it.

God Bless and Keep You.

Jackie

Re: checking in

Hi Everyone, checking in I was in land with my husband at our daughter and son-in-laws. We took care of our four yr old granddaughter /arinna. The road trip was great just the two of us. I had half the bed open in the back of my van and was able to stretch out. At the time I was having horrible fibromyalgia pain in my legs and feet. The house had many stairs so I would cry when I went to bed. I think it is also the sarc. The sarc started in my jaw and went to my brain. That was in 1989 and since than the list of diagnosis' has added up. Trigeminal neuralgia, Stroke, Diabetes Insipidus, Panhypopituitarism, hypothyroidism, adrenal insufficiency, (list won the most concerning, I can go into an adrenal crisis in seconds of stress good or bad and end up in the hospital to prevent a coma, the steroids are keeping me alive) steroid dependent, hyponatremia, (low sodium) dry eye syndrome, fibromyalgia, high blood pressure, inconintence (both), and now micobacterium chelonae. Today I am pain free?????? and I am enjoying the day! For those who are interested I want to tell what my daughter carolyn made for me. She took and ordinary pocket folder with clips in center for papers. On the front of folder using colorful labels, it says 911 next the hynatremia next dob full name next phone #'s and emergency contact my husband. second neice. next where I am a patient, med # and brief note stating, I may not be capable of making decisions. These are all seperated labels all different colors. other side of from of folder more labels all with my meds and dosages. on pocket front labels with all of docs names and speciality and last two insurance info. next back of folder inside labels listing all diseases, and list of allergies and last one non-smoker and no alcohol. the clips have three sheets each inclosed in plastic covers first is letter from doctor stating how I should be treated if I end up in a different er the second letter is from the doc stating that I am carrying syringes for er use if I should go into adrenal crisis! and also that I need my electric scooter for mobility. the third sheet is my living will. I have had more compliments from doctors and er staff and always thank me for having it. I thank my daughter she has been a life saver for three occasions in er. I haven't been writing because I was in so much pain all i could do was crumble up with ice packs and wait for the meds to do something. Thanks for listening and for the call for a members to check in. banna >> Don''t feel bad about no checking in .....sometimes its unavoidable. We had a big ice storm and lost elec. for 5 days. I don't know how you did it, feeling so cold and all. Gets through your bones! Hope you are feeling pain frree,> Debbie>

[Guest guest]

congratulations on the great gamma person. Prayers are with you and for the baby.

Jackie

CHECKING IN

Hello everyone. I think I'm doing ok at the moment. I had another bout with MRSA but this time I went to the ortho doc & when I went back a week later for the results he said I had MRSA again, this time in my elbow & forearm. He sent me directly to the hospital but I had planned a thrift store trip at St s and a stop at my local yarn shop. Hard headed me did those and also had lunch with my daughter. I didn't want to be in the hospital that long without having a bit of fun first. Since they did surgery this time on my elbow & 2 spots on my forearm I got less of the Vancomycin so I could sneak out & smoke. Yea, I know it's bad for me but the sarcs not good for me either. My blood sugar was up again even though I haven't been diagnosed with diabetes. They gave me pills a couple times but they must not have worked good enough & I got insulin shots several days also. They gave me a prescription for a glucose meter to check my blood 2 times a day just to get some kind of idea of what's going on. The hospital I was at has the best meals & desserts but they put me on the diabetes diet & my portions shrunk & the cakes disappeared. They tried to fool me with a smaller plate but it didn't work. LOL They did come around with a snack cart before bedtime & they had the best ice cream made with Splenda! It's the one fake sugar that doesn't give me diarrhea. I'm so sorry eveyone is not up to par and I'll pray for the group like I do every night. I am still trying to pretend the sarc isn't there but every time I come out of the hospital it's been getting harder to use my walker instead of this wheelchair. I could join the gym for way less than the amount left over after medicare pays but I don't know if the gym would want me there. I might be considered an accident waiting to happen. LOL I'm not taking my Cytoxan treatment again until both docs tell me it's ok. I have to apply for the medicade spenddown before I can send in the paperwork to get a reduced price on the Remicade Dr B wants to put me on but I keep getting sick. Maybe I can manage it this week!

Oh yea I forgot the good stuff! I'm a great grandmother! Ava Lynn came into the world on August 19. I was still waiting on the blood test about the MRSA but I was in the ER waiting room all 3 days it took for her to get here. My granddaughter had gestational diabetes and her blood pressure was so high he told her to forget about going to work that day and go straight to the hospital. It took 3 days of them trying to induce her labor before that sweet little girl was born. Her husband and mother were both in the room when she delivered. Even though her husband was feeling queasy a few times he made it & even cut the cord! I was impressed when I heard that. I was in the ER waiting room knitting for the baby & socks for my charity knitting group.

How is Rose doing? The last post I read she seemed terribly down & not like her normal cheerful funny self.

Have to get up in less than 6 hours so I'll check in tomorrow if I'm not back in the hospital.

in 'tucky

Have

Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

[Guest guest]

HI DENISE,WELCOME BACK.I AM A NEW MEMBER.I JOINED EARLIER THIS YEAR.I PRAY I PRAY THAT YOUR SURGERY GO WELL.BE BLESSED.AS YOUR DAY SO SHALL YOUR STRENGTH BEHELENSubject: Checking InTo: Neurosarcoidosis Date: Thursday, October 1, 2009, 2:55 PM

Yes it has been along LONGGGGGggggggggg time since I have posted anything to this awesome group.... I am so sorry...

First off, welcome to any new comers here, I am glad your here to get help and support with this lovely disease we all share.... The support here we get is totally awesome.... We have a great bunch of people who devote many many many hours to help us all try and find answers and comfort when struggling with health issues themselves. I want to take this time to APPLAUD our many many wonderful leaders we have here....

Second, let me introduce/reintrodu ce myself to you all. My name is and I am from Iowa. I was diagnosed with neurosarcoid in 1996 and have been doctoring every since then.. YAHOOOoooooooooo .. what a roller coaster ride it has been..... I started getting my treatments up in Sioux Falls, South Dakota, but have since transferred myself up to the Mayo Clinic in Rochester, Minnesota... Its the best decision I have ever made... They are awesome up there, and seem to know what they are doing...

Anyways since 1996, I have been diagnosed with many many other health related diseases. Auto Immune Hepatitis, Lupus, a blood clotting disorder my blood doesn't clot properly, so I get nose bleeds alot. and there are more, but at this time I am not remembering them all. Yes I suffer from CRS also... ( CRS = Can't Remember Stuff)

I am going to be having surgery October 8th up at the Mayo Clinic, I am having a hysterectomy done, as this bleeding is not fun, and I am 47 years old, and am not going to use the baby box anymore, so just let's get rid of it..... I am so totally ready..... I am a bit nervous and scared about having surgery, as the last surgery I had was my appendix out, and I went into fluid overload, and I felt like I was drowning in the recovery room..... It was scary, and the nurses wouldn't really listen to me, they thought I was just getting excited and worked up. I finally convinced them to get my mother back in with me, and she got them to jump into action, giving me massive doses of lasix. The fluid did leave somewhat but I continue to struggle with extra fluid, and swelling in my feet and ankles all the way up to my hips are swollen... Some days are more swollen then others....

Oh I must add that I am a LPN, and worked in a nursing home. I had to quit being a nurse due to this disease, and that was an awful time giving up my career that I totally loved.... We could all write a book on the loses we have had to endure because of this disease..

As of late, I am volunteering at our local Domestic Abuse shelter, and have just recently been hired back on staff working 24 hours / week.. It gives me something to do, and a reason to get out of the house.... I am on disability, and that bites too.....

I have tons of questions I want to ask, but will write another post here soon with them in...

Again welcome and I am sorry for being MIA for so long....

I do have a facebook account if you do just let me know...

Take care,

from Iowa...

[Guest guest]

welcome back it's good to hear from you, and let me tell you, you will not miss your uterus, (sorry guys)I had fibroids, and had my hysterectomy about 5 years ago. my Sarc doctor put me on IV steroids before and

after the surgery, to keep the Sarac monster at bay, something to think about it, it worked very well. I know the up and down battle, and know you and all are always in my prayers!  Blessings,Marla

 

Yes it has been along LONGGGGGggggggggg time since I have posted anything to this awesome group.... I am so sorry...

First off, welcome to any new comers here, I am glad your here to get help and support with this lovely disease we all share.... The support here we get is totally awesome.... We have a great bunch of people who devote many many many hours to help us all try and find answers and comfort when struggling with health issues themselves. I want to take this time to APPLAUD our many many wonderful leaders we have here....

Second, let me introduce/reintroduce myself to you all. My name is and I am from Iowa. I was diagnosed with neurosarcoid in 1996 and have been doctoring every since then.. YAHOOOoooooooooo .. what a roller coaster ride it has been..... I started getting my treatments up in Sioux Falls, South Dakota, but have since transferred myself up to the Mayo Clinic in Rochester, Minnesota... Its the best decision I have ever made... They are awesome up there, and seem to know what they are doing...

Anyways since 1996, I have been diagnosed with many many other health related diseases. Auto Immune Hepatitis, Lupus, a blood clotting disorder my blood doesn't clot properly, so I get nose bleeds alot. and there are more, but at this time I am not remembering them all. Yes I suffer from CRS also... ( CRS = Can't Remember Stuff)

I am going to be having surgery October 8th up at the Mayo Clinic, I am having a hysterectomy done, as this bleeding is not fun, and I am 47 years old, and am not going to use the baby box anymore, so just let's get rid of it..... I am so totally ready..... I am a bit nervous and scared about having surgery, as the last surgery I had was my appendix out, and I went into fluid overload, and I felt like I was drowning in the recovery room..... It was scary, and the nurses wouldn't really listen to me, they thought I was just getting excited and worked up. I finally convinced them to get my mother back in with me, and she got them to jump into action, giving me massive doses of lasix. The fluid did leave somewhat but I continue to struggle with extra fluid, and swelling in my feet and ankles all the way up to my hips are swollen... Some days are more swollen then others....

Oh I must add that I am a LPN, and worked in a nursing home. I had to quit being a nurse due to this disease, and that was an awful time giving up my career that I totally loved.... We could all write a book on the loses we have had to endure because of this disease..

As of late, I am volunteering at our local Domestic Abuse shelter, and have just recently been hired back on staff working 24 hours / week.. It gives me something to do, and a reason to get out of the house.... I am on disability, and that bites too.....

I have tons of questions I want to ask, but will write another post here soon with them in...

Again welcome and I am sorry for being MIA for so long....

I do have a facebook account if you do just let me know...

Take care,

from Iowa...

[Guest guest]

,

Welcome home! It's good to see you post!

Can you imagine-- we're 600 + members now! The Archives and Links are growing, and so much information is there on the various aspects of sarcoidosis. I could not be more proud of the moderators and all the effort they've put in helping to keep the fort on the ground. (Or maybe it's that they've been keeping the owners grounded...love ya guys)

So-- questions? What's up-- beyond the work you do for the crisis center? I see you've got some sx coming up, I know that you'll do fine. I'm seriously thinking of going that route, as my ovaries are not putting out testestorone 7x the normal amount. (normal is less than 18--I'm 138.) It keeps adding to the blood sugar issues, along with way to many other problems--

Let us know how we can help,

Love ya,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Thursday, October 1, 2009 12:55:10 PMSubject: Checking In

Yes it has been along LONGGGGGggggggggg time since I have posted anything to this awesome group.... I am so sorry...First off, welcome to any new comers here, I am glad your here to get help and support with this lovely disease we all share.... The support here we get is totally awesome.... We have a great bunch of people who devote many many many hours to help us all try and find answers and comfort when struggling with health issues themselves. I want to take this time to APPLAUD our many many wonderful leaders we have here....Second, let me introduce/reintrodu ce myself to you all. My name is and I am from Iowa. I was diagnosed with neurosarcoid in 1996 and have been doctoring every since then.. YAHOOOoooooooooo .. what a roller coaster ride it has been..... I started getting my treatments up in Sioux Falls, South Dakota, but have since transferred myself up to the Mayo Clinic in Rochester, Minnesota... Its the best decision

I have ever made... They are awesome up there, and seem to know what they are doing...Anyways since 1996, I have been diagnosed with many many other health related diseases. Auto Immune Hepatitis, Lupus, a blood clotting disorder my blood doesn't clot properly, so I get nose bleeds alot. and there are more, but at this time I am not remembering them all. Yes I suffer from CRS also... ( CRS = Can't Remember Stuff)I am going to be having surgery October 8th up at the Mayo Clinic, I am having a hysterectomy done, as this bleeding is not fun, and I am 47 years old, and am not going to use the baby box anymore, so just let's get rid of it..... I am so totally ready..... I am a bit nervous and scared about having surgery, as the last surgery I had was my appendix out, and I went into fluid overload, and I felt like I was drowning in the recovery room..... It was scary, and the nurses wouldn't really listen to me, they thought I was just

getting excited and worked up. I finally convinced them to get my mother back in with me, and she got them to jump into action, giving me massive doses of lasix. The fluid did leave somewhat but I continue to struggle with extra fluid, and swelling in my feet and ankles all the way up to my hips are swollen... Some days are more swollen then others.... Oh I must add that I am a LPN, and worked in a nursing home. I had to quit being a nurse due to this disease, and that was an awful time giving up my career that I totally loved.... We could all write a book on the loses we have had to endure because of this disease..As of late, I am volunteering at our local Domestic Abuse shelter, and have just recently been hired back on staff working 24 hours / week.. It gives me something to do, and a reason to get out of the house.... I am on disability, and that bites too.....I have tons of questions I want to ask, but will write another

post here soon with them in...Again welcome and I am sorry for being MIA for so long....I do have a facebook account if you do just let me know...Take care, from Iowa...

[Guest guest]

Happy Thanksgiving to all! I hope you all enjoy lots of food and have a pain free day. I am still healing (my elbow) from the MRSA surgery and still haven't had a Cytoxin treatment since July? August? I got all my info together finally for the request to the drug company for Remicade at a reduced cost. I know that Medicare will not pay for it but I have been approved for Medicaid but am not sure if Kentucky's will pay for it. Any other Kentuckians have any experience with this type situation? I'm getting concerned because my 4th brain ventricle is closing & that's not a good thing. I've been very busy with doctor appts and all that good stuff so I haven't read the posts much lately. My mother has just been diagnosed with two small spots of cancer, one on each lobe so I may not get

alot of time to check in as she started her chemo today & is getting a port on Monday. She has lots of questions to ask me about my experience with the chemo & the port. Please pray for her. Thank you all.

in 'tuckyJoin our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

Subject: ScienceDaily: Flaxseed oil may reduce osteoporosis riskTo: neurosarcoidosis Date: Wednesday, November 25, 2009, 7:11 PM

Tracie (Tiodaat (AT) att (DOT) net) has sent you a link to the following page on ScienceDaily:Flaxseed oil may reduce osteoporosis riskhttp://www.scienced aily.com/ releases/ 2009/11/09112311 4638.htmAnimal studies suggest that adding flaxseed oil to the diet could reduce the risk of osteoporosis in post-menopausal women and women with diabetes.* Note: the sender's email address has not been verified.

[Guest guest]

, I am sorry to hear you have lost your mother but glad that she had a wonderful time looking at the pics before she passed on. When I almost lost my mom to a heart problem I started to say "Love you" at the end of every phone call. Now if I forget to...my mom reminds me. My mom is 91 and any day could be her last. You and your family will be in my prayers. hugs S.Life is short...live it to the fullest...to your last living breath.

From: Krumme <krumdawg (AT) tx (DOT) rr.com>Subject: Re: Tracie's goneTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, December 24, 2009, 12:57 PM

Tracie,

In the process of taking care of the same issue. May you be bless as weel as all my friends here. I am blessed by your friendship, so i bless you and all. Please all remeber the reason for the season. I wish all health and wellness.

Greg aka Krumdawg

Find me on face book Krumme in Texas

Tracie's gone

My computer is out of svc-- it's got a virus- and is hopefully being fixed.

Wish you all a merry Christmas

Hugs,

Tracie