Re: (unknown)

June 5, 2004

Wow Sherri,

That is amazing and inspirational! You Go Girl!

Vandever

LAP RNY 4-6-04

305/254/165

(unknown)

> OK all...the total so far is 164 lbs!!!!! I am about 30-35 lbs from

> goal!!!!!! I will be 9 months post-op on June 17th.......keeping my

fingers

> crossed!!!!!!! Hope all is well with everyone? sherri

>

> Stay strong and healthy

>

June 5, 2004

Thanks ...looks like you are doing great yourself!!!!!! sherri

(unknown)

> OK all...the total so far is 164 lbs!!!!! I am about 30-35 lbs from

> goal!!!!!! I will be 9 months post-op on June 17th.......keeping my

fingers

> crossed!!!!!!! Hope all is well with everyone? sherri

>

> Stay strong and healthy

>

October 27, 2008

I'm sorry to hear this, but know what you're saying, hope you get to feeling better soon!

I had a feeling this would happen. I was feeling good for a few days,

then poof! gone. I woke up in lots of pain and tightness in my legs. I

e-mailed my dr. to see if we can experiment with something else. I take

17 pills a day plus physical therapy. I have to stay strong but at

times I feel like I'm at my wits end. God bless us all.

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

December 18, 2008

Why us indeed! I think " what caused " or brought on an attack resulting in NS is different for everyone. I was doing pretty good, in drug remission, working as an RN on the Labor and delivery unit, then I had a 14 hour shift from hell, started getting sick, knew the sarc was acting out again, and down hill until " NS " , I have not been in remission since. But I think it is different for everyone. I just think that God wants me home more, spend more time with my kids that are growing up and moving out.

OK I have to stop here for a minute, and tell you all that it is just beautiful outside, it is snowing big fluffy flakes, as I look out my window I see a pine tree catching the snow, it's the perfect picture. As I sit here in my warm office with the little heater keeping me warm. Right now I can forget about everything, and say " Life is good " . I will close this with a very warm, pain free Merry Christmas and Happy Holidays to all.

Love and God Bless, Marla

does anyone know what all thier ns was caused from initially? i was

told it would cost to much to find out the cause,then just to treat the

symptoms. thank you to all who have responded for me it brought tears

to my eyes. the support is appreciated.this is very new to me but in

other fields of medicine i have had 24 surgeries and by far this is the

worst. sorry to be a complainer but you said i can vent. i know we are

not supposed to ask why me so ill say why us lol!!!!

-- 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)

December 18, 2008

I'm with Marla today, it just started snowing here also. I'm in No. California-- and it has been so dry- this is just wonderful! Hubbys bringing home a rotisserie chicken from the store, so no cooking needed tonight, and it's time to snuggle in with a good book, a high energy lab pup, and spend time laughing at her antics.

Oh-- and vent away!

Hugs,

Tracie

To: Neurosarcoidosis Sent: Thursday, December 18, 2008 2:23:50 PMSubject: Re: (unknown)

Why us indeed! I think "what caused" or brought on an attack resulting in NS is different for everyone. I was doing pretty good, in drug remission, working as an RN on the Labor and delivery unit, then I had a 14 hour shift from hell, started getting sick, knew the sarc was acting out again, and down hill until "NS", I have not been in remission since. But I think it is different for everyone. I just think that God wants me home more, spend more time with my kids that are growing up and moving out. OK I have to stop here for a minute, and tell you all that it is just beautiful outside, it is snowing big fluffy flakes, as I look out my window I see a pine tree catching the snow, it's the perfect picture. As I sit here in my warm office with the little heater keeping me warm. Right now I can forget about everything, and say "Life is good". I will close this with a very warm, pain free Merry Christmas and Happy

Holidays to all. Love and God Bless, Marla

On Thu, Dec 18, 2008 at 10:57 PM, beautybarnweber <beautybarnweber@ yahoo.com> wrote:

does anyone know what all thier ns was caused from initially? i was told it would cost to much to find out the cause,then just to treat the symptoms. thank you to all who have responded for me it brought tears to my eyes. the support is appreciated. this is very new to me but in other fields of medicine i have had 24 surgeries and by far this is the worst. sorry to be a complainer but you said i can vent. i know we are not supposed to ask why me so ill say why us lol!!!!-- 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)

December 18, 2008

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

To: Neurosarcoidosis Sent: Thursday, December 18, 2008 12:57:48 PMSubject: (unknown)

does anyone know what all thier ns was caused from initially? i was told it would cost to much to find out the cause,then just to treat the symptoms. thank you to all who have responded for me it brought tears to my eyes. the support is appreciated. this is very new to me but in other fields of medicine i have had 24 surgeries and by far this is the worst. sorry to be a complainer but you said i can vent. i know we are not supposed to ask why me so ill say why us lol!!!!

June 12, 2009

Shauna, You are always in my prayers. Marl a

Hi all,

I got news yesterday that I was diabetic, high blood pressure and high cholestorol. What a bummer. I have gain quite a bit of weight over the last year due to prednisone and for some reason it just isn't going anywhere this time.

I went to a new physician for my physical and she just makes me feel so bad. She tends to think that the prednisone had nothing to do with all of my problems. My sarcoid doctor told me before he started me on the methylprednisone that one of his patients got diabetes from the prednisone a few years ago. My mom who is a nurse also told me that diabetes was possoble from Prednisone. I haven't told her yet trying to find a way to tell her that I have been diagnosed. I am heading to a class soon to get more info on how to manage it and hopefully with the right diet I can keep it under control.

I have been check my levels today and this morning before I ate my numbers where 160 after eating 177 and then I went and exercised and afterwards my number was 98. I am going to learn all I can and try to change what needs to be changed. This is really hard to deal with on top of the sarcoids and before I was diagnosed with Sarcoids I was 130 lbs. I haven't seen that in years but now not really trying to get there but to a more healthly number.

So I am trying to take this all in so I can deal with it.

Greg, I didn't even now I was pre-diabetic but I have been on and off the prednisone for 6 years. I keep my eyes checked and trying to control blood pressure as it has been on the rise since last year. I guess that all comes from the prednisone and the weight gain.

Anyway gang, say a prayer for me that I will be able to adapt or control whatever I have to deal with. Love hearing from you guys and keep exercising if only for a few minutes of the day.

Shauna in Atl.

June 13, 2009

Sorry to hear about you getting all that dumped on you at once. When i had my really big sarc-flare 10 years ago that's when I got high-blood pressure and diabetes...at the same time. My doc really felt sorry for me getting all that plus sarc at the same time. If you can I'd get a different doc. This is the first time I've ever heard of a doc not knowing pred can cause diabetes. But when you are overweight they want to blame everything on your weight. I wanted to prove them wrong so i lost 75-80 lbs. and I am still pretty sick. And I am very happy to point that out to them! lol My blood sugar numbers are better but some of my joint

issues are just the same if even worse. And I've developed a few new problems since losing the weight because sarc is a progressive disease whether you lose weight or not. I still need to lose more weight but I've had a bit of a flare over the last month and haven't lost anything. I used NutriSystem but any online groups are good for the support we need. There's even a chronic pain and illness thread on the Nutrisystem site. The threads i visit have been very helpful and supporting. I really don't think i would have lose as much without the support. My thinking is if I want more credibility with my docs then I have to do what they say and by losing weight i can also make my point better. Otherwise they will just keep blaming my weight and it's an endless circle with them. I think some docs get off on making their patients

feel bad. I'll be praying for you and thanks for the reminder to keep trying to exercise. hugs! S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shameâ€¦.Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and My hope is in You all day long." Psalm 25:3,4,5 NIVSubject: (unknown)To: neurosarcoidosis Date: Thursday, June 11, 2009, 9:19 PM

Hi all,

I got news yesterday that I was diabetic, high blood pressure and high cholestorol. What a bummer. I have gain quite a bit of weight over the last year due to prednisone and for some reason it just isn't going anywhere this time.

I went to a new physician for my physical and she just makes me feel so bad. She tends to think that the prednisone had nothing to do with all of my problems. My sarcoid doctor told me before he started me on the methylprednisone that one of his patients got diabetes from the prednisone a few years ago. My mom who is a nurse also told me that diabetes was possoble from Prednisone. I haven't told her yet trying to find a way to tell her that I have been diagnosed. I am heading to a class soon to get more info on how to manage it and hopefully with the right diet I can keep it under control.

I have been check my levels today and this morning before I ate my numbers where 160 after eating 177 and then I went and exercised and afterwards my number was 98. I am going to learn all I can and try to change what needs to be changed. This is really hard to deal with on top of the sarcoids and before I was diagnosed with Sarcoids I was 130 lbs. I haven't seen that in years but now not really trying to get there but to a more healthly number.

So I am trying to take this all in so I can deal with it.

Greg, I didn't even now I was pre-diabetic but I have been on and off the prednisone for 6 years. I keep my eyes checked and trying to control blood pressure as it has been on the rise since last year. I guess that all comes from the prednisone and the weight gain.

Anyway gang, say a prayer for me that I will be able to adapt or control whatever I have to deal with. Love hearing from you guys and keep exercising if only for a few minutes of the day.

Shauna in Atl.

June 13, 2009

HI Ze... my golly, seems like a long time since I've seen a post from you. Good to hear from you.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

(unknown)

Hi Joy,

I was diagnosed with PAH from an echo just over a year ago. I then had to have a heart cath, to confirm diagnosis, as the echo is just an indicator. After the results of the echo came back then they decided what meds to put me on, for me they chose sildenifil (viagra). I take this 3 times a day at 6 hour intervals. There are stronger meds if they feel I need them. My last echo (may) still showed some PAH, but I'll have to wait until I see the PH team in september before I know what they are going to do.

It has made a difference, although it wasn't immediately apparent. Little things like I would be right behind Rob at the door, where before I would have been several yards behind him. I also found that I am able to walk for longer and my sats recovery rate is considerably quicker.

The sildenifil isn't known to interact with other drugs so there was no problems there.

Love Ze xx

June 14, 2009

,

I'm glad you decided to join us here on the board. I do understand where you're coming from. Getting a diagnosis like this is overwhelming and then a support group reinforcing the diagnosis could be a bit hard to take until you are able to process all the changes.

Please ask any questions you need to. Don't feel silly, there's a steep learning curve to all this. No one was born knowing about this disease and I wish that none of us had reason to know about it now. Just ask, someone here will either know the answer or will make a suggestion of where to find out.

University of Alabama at Birmingham is a terrific facility. They are one of the "Centers of Excellence" listed at www.ipfnet.org. All of these university medical centers excell at the treatment of interstitial lung disease and coordinate both treatment and research. I feel confident that you are in good capable hands.

, I'm glad you're here. Remember that none of us is going to die tomorrow. I remember being frustrated when I was told I'm 'too healthy' for a lung transplant. Now 3 years later I'm thrilled to be 'too healthy'. I'll keep it that way as long as I can!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, June 14, 2009 7:53:36 PMSubject: (unknown)

Hello Everyone,

My name is , I was diagnosed on 1/28/08. I joined the group at this time, however,I was so overwhelmed with everything that was going on, the posts actually made me even more depressed. I am a 45 year old woman who felt that I would live forever, but the rug was literally pullled out from under me. I now feel that I need to talk with people who are going through the same challenges that I am going through. I have been reading the post for the last hour or so, and I am truly confused, there are so many terms that I do not know. I am currently receiving treatment and the lung transplant clinic at Univeristy of Aabama Bimingham, Kirkland Clinic. I would appreciate it if anyone who has had experiences with this facility let me know how you feel about it. I still have not been put on the transplant list (told not sick enough yet, can you believe that - in one sentence, you are told that you have

approx. 1 - 2 years to live, and not sick enough in the other).

Thanks for letting me back into the group.

June 15, 2009

welcome, sorry you need us, glad you found us

in the beginning, i found this web site, but was unable to read it at the time, took several months -- it was too upsetting

"there is no expiration date on your behind" per Peggy C

yes it is normal to be evaluated for a lung transplant and to be told that the lungs are too healthy at the time

knowing the right time to get listed can be difficult

my docs gave me the worst case scenerios first, I think they need to be up front with you

anyway, i am glad that your are going to docs who specialize in interstitial lung diseases

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: (unknown)To: Breathe-Support Date: Sunday, June 14, 2009, 7:53 PM

Hello Everyone,

My name is , I was diagnosed on 1/28/08. I joined the group at this time, however,I was so overwhelmed with everything that was going on, the posts actually made me even more depressed. I am a 45 year old woman who felt that I would live forever, but the rug was literally pullled out from under me. I now feel that I need to talk with people who are going through the same challenges that I am going through. I have been reading the post for the last hour or so, and I am truly confused, there are so many terms that I do not know. I am currently receiving treatment and the lung transplant clinic at Univeristy of Aabama Bimingham, Kirkland Clinic. I would appreciate it if anyone who has had experiences with this facility let me know how you feel about it. I still have not been put on the transplant list (told not sick enough yet, can you believe that - in one sentence, you are told that you have

approx. 1 - 2 years to live, and not sick enough in the other).

Thanks for letting me back into the group.

July 12, 2009

Beth,

Do you live close to Duke? I have an appt there with Dr. Noble at 11 AM on 8/20 -

Dorothy, Fayetteville, GA

UIP 7/05

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of BethSent: Sunday, July 12, 2009 8:36 PMTo: Breathe-Support Subject: Re: (unknown)

Jack,

I think that sounds like a fine idea. I will be in the midst of pulmonary rehab so someone may be carrying me around in a bucket (lol) but I am looking forward to meeting you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>To: Breathe-Support Group <Breathe-Support >Sent: Sunday, July 12, 2009 8:26:44 PMSubject: (unknown)

Step one on my move to North Carolina has taken place. My house has finally sold. For the interim, a friend

has rented an apartment on a month-to-month basis until the other two events happend. It's in a former high

school and quite interesting, smack in the middle of Bangor. I can walk to most things I need and enjoy some

of the night life. A men's club is across the street, but who wants to spend his evening with a bunch of men.

A neighbor, named Norma jean, the same as Marilyn Monroe, is a 70 something version. She's already hit me up for Scrabble. Little does she know that I am undefeated.

Beth, I have a late September session with Dr. on. Perhaps we can meet for lunch this time.

Jack79/IPF - UIP/dx06/05 Maine

July 12, 2009

Dorothy,

Actually, yes. I live about 10 minutes from Duke South where I see my doctors and where I kind of assume you see yours.

If you feel up to it after your appointment would you like to have lunch or even a cup of coffee? I'd love to meet you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, July 12, 2009 9:03:34 PMSubject: RE: (unknown)

Beth,

Do you live close to Duke? I have an appt there with Dr. Noble at 11 AM on 8/20 -

Dorothy, Fayetteville, GA

UIP 7/05

From: Breathe-Support@ yahoogroups. com [mailto:Breathe- Support@yahoogro ups.com] On Behalf Of BethSent: Sunday, July 12, 2009 8:36 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: (unknown)

Jack,

I think that sounds like a fine idea. I will be in the midst of pulmonary rehab so someone may be carrying me around in a bucket (lol) but I am looking forward to meeting you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>To: Breathe-Support Group <Breathe-Support@ yahoogroups. com>Sent: Sunday, July 12, 2009 8:26:44 PMSubject: (unknown)

Step one on my move to North Carolina has taken place. My house has finally sold. For the interim, a friend

has rented an apartment on a month-to-month basis until the other two events happend. It's in a former high

school and quite interesting, smack in the middle of Bangor. I can walk to most things I need and enjoy some

of the night life. A men's club is across the street, but who wants to spend his evening with a bunch of men.

A neighbor, named Norma jean, the same as Marilyn Monroe, is a 70 something version. She's already hit me up for Scrabble. Little does she know that I am undefeated.

Beth, I have a late September session with Dr. on. Perhaps we can meet for lunch this time.

Jack79/IPF - UIP/dx06/05 Maine

July 17, 2009

If anyone else signs into skype all we need is your skype name and we can call. is just a beauty. I had forgotten about the calland there she was all pretty.. here I was all messy... didn't matter. I loved every bit of it.. can't wait to do it again. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Peggy Yes, I'd believe it. You announced earlier today you were going to do it....lol Glad you and GIO talked. She's just the greatest, what a wonderful character. And, you're our Ms. Huggy and I'm sure she loved talking to you. > > AIR FAMILY, You are never gonna believe it--I just talked with > in Australia on Skype.. She is beautiful.. I am so excited.. no sleep > again tonight.. > I will have to learn how to WAIT my turn to talk I'm afraid.. toooooo > excited. > If anyone else has skype let me know and we can see and talk.. FUN > FUN FUN > > > > Love and Prayers, Peggy > IPF 2004, Florida > > Worry looks around, > Sorry looks back, > Faith looks up. > > > ï¿¼ >

July 17, 2009

do you need a web cam for skype?

by the way, i saw a Kindle -- someone at rehab was using it

she has cystic fibrosis and has been in the hospital many times

if she doesn't want to read with her eyes, she can read with her ears

neat gizmo!!!

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: (unknown)To: Breathe-Support Date: Friday, July 17, 2009, 11:43 AM

If anyone else signs into skype all we need is your skype name and we can call. is just a beauty. I had forgotten about the call

and there she was all pretty.. here I was all messy... didn't matter. I loved every bit of it.. can't wait to do it again.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

PeggyYes, I'd believe it. You announced earlier today you were going to doit....lolGlad you and GIO talked. She's just the greatest, what a wonderfulcharacter. And, you're our Ms. Huggy and I'm sure she loved talking toyou.>> AIR FAMILY, You are never gonna believe it--I just talked with > in Australia on Skype.. She is beautiful.. I am so excited.. no sleep> again tonight..> I will have to learn how to WAIT my turn to talk I'm afraid.. toooooo> excited.> If anyone else has skype let me know and we can see and talk.. FUN> FUN FUN>>>> Love and Prayers, Peggy> IPF 2004,

Florida>> Worry looks around,> Sorry looks back,> Faith looks up.>>> ï¿¼>

July 17, 2009

Yes Joyce, The Kindle is wonderful. When I drive to Tampa I let it read to me. I saw last night they are now 299.00So the price is coming down. Thats probably as low as it will go. I would pay that in a heart beat.... if I had it... LOL I hate being old and broke.. even though I do seem to get my hearts desires. I am a happy camper. I read in my Kindle every day. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. do you need a web cam for skype? by the way, i saw a Kindle -- someone at rehab was using it she has cystic fibrosis and has been in the hospital many times if she doesn't want to read with her eyes, she can read with her ears neat gizmo!!! Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: (unknown)To: Breathe-Support Date: Friday, July 17, 2009, 11:43 AM If anyone else signs into skype all we need is your skype name and we can call. is just a beauty. I had forgotten about the call and there she was all pretty.. here I was all messy... didn't matter. I loved every bit of it.. can't wait to do it again. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. <pastedGraphic.tiff> PeggyYes, I'd believe it. You announced earlier today you were going to doit....lolGlad you and GIO talked. She's just the greatest, what a wonderfulcharacter. And, you're our Ms. Huggy and I'm sure she loved talking toyou.>> AIR FAMILY, You are never gonna believe it--I just talked with > in Australia on Skype.. She is beautiful.. I am so excited.. no sleep> again tonight..> I will have to learn how to WAIT my turn to talk I'm afraid.. toooooo> excited.> If anyone else has skype let me know and we can see and talk.. FUN> FUN FUN>>>> Love and Prayers, Peggy> IPF 2004, Florida>> Worry looks around,> Sorry looks back,> Faith looks up.>>> ï¿¼>

July 17, 2009

Oh as to Skype. no you don't have to have a web cam. you can just talk. but it is so cool to see each other. My daughter and I do that. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. do you need a web cam for skype? by the way, i saw a Kindle -- someone at rehab was using it she has cystic fibrosis and has been in the hospital many times if she doesn't want to read with her eyes, she can read with her ears neat gizmo!!! Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: (unknown)To: Breathe-Support Date: Friday, July 17, 2009, 11:43 AM If anyone else signs into skype all we need is your skype name and we can call. is just a beauty. I had forgotten about the call and there she was all pretty.. here I was all messy... didn't matter. I loved every bit of it.. can't wait to do it again. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. <pastedGraphic.tiff> PeggyYes, I'd believe it. You announced earlier today you were going to doit....lolGlad you and GIO talked. She's just the greatest, what a wonderfulcharacter. And, you're our Ms. Huggy and I'm sure she loved talking toyou.>> AIR FAMILY, You are never gonna believe it--I just talked with > in Australia on Skype.. She is beautiful.. I am so excited.. no sleep> again tonight..> I will have to learn how to WAIT my turn to talk I'm afraid.. toooooo> excited.> If anyone else has skype let me know and we can see and talk.. FUN> FUN FUN>>>> Love and Prayers, Peggy> IPF 2004, Florida>> Worry looks around,> Sorry looks back,> Faith looks up.>>> ï¿¼>

July 18, 2009

ï»¿

Peggy... guess I forgot to answer you...

Is there a charge for calling you?

If so, is it the same to call anyone anywhere?

Yes, I have speakers. Now what?

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: (unknown)

If anyone else signs into skype all we need is your skype name and we can call. is just a beauty. I had forgotten about the call and there she was all pretty.. here I was all messy... didn't matter. I loved every bit of it.. can't wait to do it again.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

PeggyYes, I'd believe it. You announced earlier today you were going to doit....lolGlad you and GIO talked. She's just the greatest, what a wonderfulcharacter. And, you're our Ms. Huggy and I'm sure she loved talking toyou.>> AIR FAMILY, You are never gonna believe it--I just talked with > in Australia on Skype.. She is beautiful.. I am so excited.. no sleep> again tonight..> I will have to learn how to WAIT my turn to talk I'm afraid.. toooooo> excited.> If anyone else has skype let me know and we can see and talk.. FUN> FUN FUN>>>> Love and Prayers, Peggy> IPF 2004, Florida>> Worry looks around,> Sorry looks back,> Faith looks up.>>> ï¿¼>

August 11, 2009

, hi it's me again the late emailer. I have a problem with extreme temps either way, and cannot be out in the sun at all. 15 mins and I am sicker then a dog, flu like, nausea, sweating, I a have to go to bed, or I will start vomiting, and ache all over, I have to sleep it off.

Remicade has helped me in the flare dept. I don't have as many flares as I use to, same thing one day I couldn't get out of bed, would have to have one of my kids or my husband get me up on my feet and going.

OK, I have to put a little lightness in this. One day I couldn't get out of bed, so I screamed for my son to come and help me, lets see he was about 20 then, so he got me out of bed, helped me to the kitchen, then went back to the basement where his bedroom is, the dog had to go out, so I let go of the counter to open the door and went down with the door, couldn't get up, so I yelled for my son to come and help me again, he did, and put up against the couch and said stay there. Well I didn't I forgot and let go of the couch and went down again, yes I yelled again for my son, he came up, took me back to bed, and said, now stay there, you are not suppose to get up today. and away he went, so I stayed in bed, in fact I went back to sleep, and when I woke up, I got up.

Of course he felt proud, as he was right:). Some days we just have to laugh so we don't go crazy, and I know that feeling very well too. Blessings, Marla

Bob,Thank you for being candid. Exactly what I need right now. It makes all the difference in the world to walk into

an appointment knowing exactly what is or isn't. Especially when time is of the essence . I really need neurologistfirst but gravitated to Dr. Sharma as a whole Dr. to give me general support. On an off note. What does one do

for energy? Has anyone tried Ritilan or Addural? At this point I am not on meds for Sarc. yet. All my doctorsthat have been involved over last five years are sheepishly turning their heads and no one wants to take charge.

I am so tired that I can barely get out of bed and My flares are now two weeks out of every month. Oh , forgotto ask. It seems like sun

exposure, extreme temperatures either way, or rigorous exercise will throw me into acute flare. Does that ring a bell at all? On the stroke front. I can definately tell Sarc. masks itself in the same way.Some days I can't pick up my leg, balance myself, or think straight. I did however had a whopper of ischemic stroke last year.

Thank you for your help and prayers. I will pray for everyone and for awareness.

To:

Neurosarcoidosis Sent: Monday, August 10, 2009 7:14:44 PMSubject: Re: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/brainstem

, I will continue to pray for you and your two girls. Over the past ten years I have been to Dr Sharma 3 or 4 times. He is a very nice doctor, but he specializes in Pulmonary Sarcoidosis not Neurosarcoidosis. Therefore, do not be disappointed when you see him. He is very knowledgeable about Sarcoidosis in general, but the things that are going on with your brain he is not going to be able to help you. And not knowing all of the organs that have been affected, I can't really say how much he will be able to guide and direct you. I have been on many different types of medications and frankly the only one that has put be on an even keel has been prednisone. I was taking that and popping 24 ibuprofen every day for a couple of years, until I found a supplement that takes my pain away.

It is expensive and most people in this user group can not afford it, so they are using things that they get through their medical programs or things such as Ibuprofen that thes can afford. I just have to many things to contend with, and I really wanted the better quality of life so I am doing without on other things so that I don't have pain everyday and it gives me some energy.

By the way, I don't know if you have had full strokes, because neuorsarcoidosis can disguise itself as if you are having a stroke. Stroke like symptoms the whole works. I have these types of events from time to time, paralysis the whole bit. I am sorry you are going through such a rough time. I can really understand how you feel physically and emotionally. Unfortunately there really is very few people you can go to as they can not understand. I know you just want to be a normal person all over again. Finding your way back to some level of normal see is a huge struggle.

Anyway, I want you to know that Dr. Sharma is an excellent doctor, and a straight shooter. He will tell you what he can do for you and what he can not do for you. He will tell you where he thinks you are in the process of your personal bout with this disease, the only problem is without test results he can only go by what you tell him. So you need to take all of your medical records with you so that he can review them and maybe even copy them while you are there. One visit is very difficult for him to get to know you and be able to give you specific recommendations. He will most likely want to hook up with a local doctor that you are near so that they can consult and put a plan together to help you through the rough spots. I don't know if you know this, but Neurosarcoidosis; at this point is not curable and to date I know of nobody who has gone into remission. However, there are many cases of Sarcoidosis patients who have gone into remission for

years and some that have never had it come back. I am just telling you so that you will be prepared for your doctor visit. I don't want to discourage you, I just want you to go with the data that you need to get the best result possible out of your visit.

May God bless you and keep you and your girls in His care. Bob Casper

From: Stemple <shannon.stemple@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. com

Sent: Monday, August 10, 2009 6:06:35 PMSubject: Re:

Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/ brainstem

Hi Bob,Thank you so much for responding. It's a difficult balance as you know balancing being vigilant about staying alive with a rare disease and

going crazy from obsessively worrying. I was able today to get an appointment with Dr. Sharma in Los Angeles Sept. 21. Also foundNeuro Ophthalmologist in Seattle. Now just need to raise funds to get there. I am not married and I have no living family other than my

two daughters 15 and 17. They are terrified. I have not been able to work since my stroke 15 months ago. I managed to keep financesfrom falling apart until now. I knew something was wrong with me but I had no idea it would be this bad. I would rather have Hodgkins.

At least that is curable. My

mother died very young 52 with a very similar clinical course as mine, although she was never diagnosed withSarcoid. It makes me suspicious. Have you ever heard of someone having neurosarc. vasculitis or brain mass? Im getting the feeling I really

got the short end of the Sarc. stick. Feel like Im walking around with a bomb waiting to explode just when I least expect it. The last time I stroked,I was not suposed to live. The neurologist went off protocol to save me with a Hail (TPA) infusion. I was totally paralyzed with no ability to speak. Thank god he did and I recovered for the most part but that experience has left a permanent emotional scar. Again, just wanted to say

thank you and its good to talk with you and others.

From: Bob Casper <robertcasper@ sbcglobal. net>To: Neurosarcoidosis@ yahoogroups. com

Sent: Sunday, August 9, 2009 6:48:59 AMSubject: Re: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/ brainstem

Hello, My name is Bob Casper I have had neurosarcoidosis for 13 years now, like you I had it well before I was diagnosed. My Doctor is Vicki Wheelock a neurologist working at UC Medical Center in Sacramento CA. She is wonderful, however, her knowledge of Neurosarcoidosis is limited, she works to keep me level. I am on a steady dose of prednisone, 20 mg each day. I have been on this dosage since 2005 after being hospitalized for over a week.

She is very busy but under these circumstances, they may take you as an emergency. When I was in bad shape I would go to her office and wait until all of her patients were gone and she would see me at 6 or 7 at night. This was unofficial, but it got me through. You have so many other issues that I don't know how to handle this. Your

heart condition brings into play nothing that I have had to deal with. My sarcoid experience deals with my lungs, brain, nerves, eyes, legs, and feet. Thank God, to the best of my knowledge my heart has not been attacked yet. I will pray for you as I know that you feel all alone. Are you married and do you have any children, if you are 40 and all of this started fifteen years ago, that would mean that you were 25.

I know that this has been a heavy burden for you and wish I could do something for you, but being a sarc patient myself I know it can be a pretty lonely world. Best wishes and much healing by the grace of God,

Bob Casper

From: shannon.stemple <shannon.stemple@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. com

Sent: Saturday, August 8, 2009 7:06:39 PMSubject: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/ brainstem

Hello All,

I am thankful to find this support group! I am 40 living in California and cannot seem to get the right help. Ironic because I am/(was) acute

cardiac care nurse and have the medical connections. Yet I am completely alone here! After five long years and three strokes/one intracranial dissection, and now seizures I ALONE put the pieces together and finally got the right diagnosis! Really, does this happen to everyone? How many of us are out there statistically?

Where is the best facility for treatment? UCSF and Stanford are closest to me.

Unfortunately after surviving when I was not supposed to from my stroke/arterial dissection, I have lost my medical insurance.

I have fought so hard to stay alive over the last year and half

and now I am starting all over again!

I am waiting for new insurance to go through but it will take up to

60days. I am afraid I won't make it that long. Can anyone give me

suggestions? I would greatly appreciate it.

I first stroked and developed double vision 5years ago after repeatedly going to Dr's for 4months with no help. Now, after

suffering an unbelievable amount of near death experiences, I

pulled my old hospital records from 5 years ago. I was shocked

to find in black and white that the Rheum. who consulted on me

dictated " even though I had an elevated ace, cranial neuropathy's,

and white matter changes, not to mention vertigo,double vision,difficulty swallowing etc..... He felt confident that I did not have neurosarc! " Only based on a chest xray that was read wrong! THE PHYSICIAN NEVER TOLD ME ABOUT THIS DISEASE OR MY BLOOD TEST OR ANY POSSIBILITY OF SARCOIDOSIS! !! He discharged me and never said a word..

Five LONG years have gone by and now I am presenting end stage with no health insurance!! Can anyone make any suggestions? I can trace my symptoms of pulmonary involvement back almost 15 years ago when I was told I developed adult onset asthma with chronic fatigue and depression . Sound familiar to anyone?

15 years without treatment has caused my body to be overwhelmed by this disease. I have Pulm./eye/salivary/ skin/lymph/ bone/and now brain involement. I don't have anymore time to spin my wheels so

if anyone could help me cut to the chase and get to the right facility/Dr' s for help I would be forever grateful!!

August 12, 2009

even though I can't take it due to a sulfa allergy, they tried two doses of plaquenil on me. I would give just about anything if I could take it and keep breathing (allergy). It was amazing how much better I felt, it worked so well that I ask the pharmacist did he think I take plaquenil and benedryl together and get away with it. But alas I couldn't, my throat kept swelling and cutting off my air because of the sulfa. Maybe it would be something to ask about, some of the rest of the group use it.

As to the sun thing, yes; me and a couple of others totally relate. If I go out in the sunlight for more than just a few minutes, or if I get too hot; I am destroyed. I will get so sick that no matter how hard I fight I have to lay down, or I guess fall down. I get so weak and sick, and feel totally washed out like I've run a marathon. And no matter how hard I try not too, I will not feel better until I lie down and sleep a little while, and trust me I rarely do that, I hate feeling like I have given in; but in the instances with the sun, my body leaves me no choice. I have learned to do things at dusk, on cloudy days, and/or stay in the shade (which is hard in Florida). My son teases me to hear me fuss, he'll tell me "Ahhh, mom; you and your vampiric ways"

Subject: (unknown)To: Neurosarcoidosis Date: Tuesday, August 11, 2009, 1:22 AM

Bob,Thank you for being candid. Exactly what I need right now. It makes all the difference in the world to walk intoan appointment knowing exactly what is or isn't. Especially when time is of the essence . I really need neurologistfirst but gravitated to Dr. Sharma as a whole Dr. to give me general support. On an off note. What does one do for energy? Has anyone tried Ritilan or Addural? At this point I am not on meds for Sarc. yet. All my doctorsthat have been involved over last five years are sheepishly turning their heads and no one wants to take charge.I am so tired that I can barely get out of bed and My flares are now two weeks out of every month. Oh , forgotto ask. It seems like sun exposure, extreme temperatures either way, or rigorous exercise will throw me into acute flare. Does that ring a bell at all? On the stroke

front. I can definately tell Sarc. masks itself in the same way.Some days I can't pick up my leg, balance myself, or think straight. I did however had a whopper of ischemic stroke last year.

Thank you for your help and prayers. I will pray for everyone and for awareness.

From: Bob Casper <robertcasper@ sbcglobal. net>To: Neurosarcoidosis@ yahoogroups. comSent: Monday, August 10, 2009 7:14:44 PMSubject: Re: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/ brainstem

, I will continue to pray for you and your two girls. Over the past ten years I have been to Dr Sharma 3 or 4 times. He is a very nice doctor, but he specializes in Pulmonary Sarcoidosis not Neurosarcoidosis. Therefore, do not be disappointed when you see him. He is very knowledgeable about Sarcoidosis in general, but the things that are going on with your brain he is not going to be able to help you. And not knowing all of the organs that have been affected, I can't really say how much he will be able to guide and direct you. I have been on many different types of medications and frankly the only one that has put be on an even keel has been prednisone. I was taking that and popping 24 ibuprofen every day for a couple of years, until I found a supplement that takes my pain away. It is expensive and most people in this user group can not afford it, so they are using things that they get through their medical programs or things such as

Ibuprofen that thes can afford. I just have to many things to contend with, and I really wanted the better quality of life so I am doing without on other things so that I don't have pain everyday and it gives me some energy. By the way, I don't know if you have had full strokes, because neuorsarcoidosis can disguise itself as if you are having a stroke. Stroke like symptoms the whole works. I have these types of events from time to time, paralysis the whole bit. I am sorry you are going through such a rough time. I can really understand how you feel physically and emotionally. Unfortunately there really is very few people you can go to as they can not understand. I know you just want to be a normal person all over again. Finding your way back to some level of normal see is a huge struggle. Anyway, I want you to know that Dr. Sharma is an excellent doctor, and a straight shooter. He will tell you what he can do for you and what he can not

do for you. He will tell you where he thinks you are in the process of your personal bout with this disease, the only problem is without test results he can only go by what you tell him. So you need to take all of your medical records with you so that he can review them and maybe even copy them while you are there. One visit is very difficult for him to get to know you and be able to give you specific recommendations. He will most likely want to hook up with a local doctor that you are near so that they can consult and put a plan together to help you through the rough spots. I don't know if you know this, but Neurosarcoidosis; at this point is not curable and to date I know of nobody who has gone into remission. However, there are many cases of Sarcoidosis patients who have gone into remission for years and some that have never had it come back. I am just telling you so that you will be prepared for your doctor visit. I don't want to discourage

you, I just want you to go with the data that you need to get the best result possible out of your visit. May God bless you and keep you and your girls in His care. Bob Casper

From: Stemple <shannon.stemple@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Monday, August 10, 2009 6:06:35 PMSubject: Re: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/ brainstem

Hi Bob,Thank you so much for responding. It's a difficult balance as you know balancing being vigilant about staying alive with a rare disease andgoing crazy from obsessively worrying. I was able today to get an appointment with Dr. Sharma in Los Angeles Sept. 21. Also foundNeuro Ophthalmologist in Seattle. Now just need to raise funds to get there. I am not married and I have no living family other than mytwo daughters 15 and 17. They are terrified. I have not been able to work since my stroke 15 months ago. I managed to keep financesfrom falling apart until now. I knew something was wrong with me but I had no idea it would be this bad. I would rather have Hodgkins.At least that is curable. My mother died very young 52 with a very similar clinical course as mine, although she was never diagnosed withSarcoid. It makes me

suspicious. Have you ever heard of someone having neurosarc. vasculitis or brain mass? Im getting the feeling I reallygot the short end of the Sarc. stick. Feel like Im walking around with a bomb waiting to explode just when I least expect it. The last time I stroked,I was not suposed to live. The neurologist went off protocol to save me with a Hail (TPA) infusion. I was totally paralyzed with no ability to speak. Thank god he did and I recovered for the most part but that experience has left a permanent emotional scar. Again, just wanted to saythank you and its good to talk with you and others.

From: Bob Casper <robertcasper@ sbcglobal. net>To: Neurosarcoidosis@ yahoogroups. comSent: Sunday, August 9, 2009 6:48:59 AMSubject: Re: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/ brainstem

Hello, My name is Bob Casper I have had neurosarcoidosis for 13 years now, like you I had it well before I was diagnosed. My Doctor is Vicki Wheelock a neurologist working at UC Medical Center in Sacramento CA. She is wonderful, however, her knowledge of Neurosarcoidosis is limited, she works to keep me level. I am on a steady dose of prednisone, 20 mg each day. I have been on this dosage since 2005 after being hospitalized for over a week. She is very busy but under these circumstances, they may take you as an emergency. When I was in bad shape I would go to her office and wait until all of her patients were gone and she would see me at 6 or 7 at night. This was unofficial, but it got me through. You have so many other issues that I don't know how to handle this. Your heart condition brings into play nothing that I have had to deal with. My sarcoid experience deals with my lungs, brain, nerves, eyes, legs, and feet.

Thank God, to the best of my knowledge my heart has not been attacked yet. I will pray for you as I know that you feel all alone. Are you married and do you have any children, if you are 40 and all of this started fifteen years ago, that would mean that you were 25. I know that this has been a heavy burden for you and wish I could do something for you, but being a sarc patient myself I know it can be a pretty lonely world. Best wishes and much healing by the grace of God, Bob Casper

From: shannon.stemple <shannon.stemple@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Saturday, August 8, 2009 7:06:39 PMSubject: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/ brainstem

Hello All,I am thankful to find this support group! I am 40 living in California and cannot seem to get the right help. Ironic because I am/(was) acutecardiac care nurse and have the medical connections. Yet I am completely alone here! After five long years and three strokes/one intracranial dissection, and now seizures I ALONE put the pieces together and finally got the right diagnosis! Really, does this happen to everyone? How many of us are out there statistically?Where is the best facility for treatment? UCSF and Stanford are closest to me.Unfortunately after surviving when I was not supposed to from my stroke/arterial dissection, I have lost my medical insurance.I have fought so hard to stay alive over the last year and halfand now I am starting all over again! I am waiting for new insurance to go through but it will take up to60days. I am afraid I won't make it that long. Can anyone give

mesuggestions? I would greatly appreciate it.I first stroked and developed double vision 5years ago after repeatedly going to Dr's for 4months with no help. Now, aftersuffering an unbelievable amount of near death experiences, Ipulled my old hospital records from 5 years ago. I was shockedto find in black and white that the Rheum. who consulted on medictated "even though I had an elevated ace, cranial neuropathy's,and white matter changes, not to mention vertigo,double vision,difficulty swallowing etc..... He felt confident that I did not have neurosarc!" Only based on a chest xray that was read wrong! THE PHYSICIAN NEVER TOLD ME ABOUT THIS DISEASE OR MY BLOOD TEST OR ANY POSSIBILITY OF SARCOIDOSIS! !! He discharged me and never said a word.. Five LONG years have gone by and now I am presenting end stage with no health insurance!! Can anyone make any suggestions? I can trace my symptoms of pulmonary involvement

back almost 15 years ago when I was told I developed adult onset asthma with chronic fatigue and depression . Sound familiar to anyone?15 years without treatment has caused my body to be overwhelmed by this disease. I have Pulm./eye/salivary/ skin/lymph/ bone/and now brain involement. I don't have anymore time to spin my wheels soif anyone could help me cut to the chase and get to the right facility/Dr' s for help I would be forever grateful!!

August 30, 2009

Hi ,

I have tried both Ritalin & Adderall for energy. Unfortunately, they worked but I had bad cases of anxiety while on them. That's when I was put on Provigil. (Usually prescribed for narcolepsy. This has helped - not totally "energized" , but better than without.

Debbie