Hi Everyone

[Guest guest]

, I feel so bad for you and Ellen, and so helpless.... The stress is

not good for you, but what can you do.... she is your sister and I know I

would be stressed out too.

I wish i had some answers for you... How about an open MRI... do they have

one of those close? Im just throwing suggestions... I don't have a clue as

to what could be wrong with her hip, but I would feel that SOMETHINIG needs

to be done...

I hope others in the group can be of more help.. Just know that I am here if

you need anything... day or night... my phone # is .

PLEASE give Ellen my best and let her know that hugs and prayers are coming

her way..... AND yours too...

Please keep us updated.

hugs

[Guest guest]

Dear , I'm so sorry about Ellen. Could it be the arthritis has destroyed her hips or pelvis? Have you tried to call Dr. Trentham: in Boston. Just a suggestions. Please take care or you too. My thoughts are with you both...Sue Marth

[Guest guest]

,

So sorry to hear you and Ellen are going through so much right now.

Maybe the bone scan will give you some idea of whats going on.

Has Ellen been on Pred for a long time?

For pain I take Ultram and get good results from it.

I agree with , see if you can get the MD. to order an open MRI.

I started taking Cytoxan this morning, I also take 30mg. of Pred. a day.

Did your stomach problems start right away or did the Cytoxan have to build up in your system before you felt the effects? My Rheumy said if I experience stomach problems we can try Cytoxan by I.V. Maybe you

can check with your doc concerning I.V. treatment.

Please try not to get too stressed. I know its hard with Ellen being so sick.

Love Ya,

Sandy

Hi everyone,I have a couple questions????? As most of you know my sister is ellen.this past weekend she ended up in the hospital. She has been in oneflare after another but last weds. she felt something in her hip. Shehas had many problems with her hips in the past. she is in a wheel chairwhen ever possible. (her house is not equipped for wheel chair). well,as the week went by her pain got worse. by sat. morning she called andsaid she was in the worse pain she ever had in her life. we told her tocall the ambulance.(her family was away) I was 41/2 hours away at myother sisters. I only live an hour from ellen and we help each otherout. anyway they took X-rays and nothing broken.of course. they don'tknow what's wrong. Her pain is a 15. ellen can take a lot of pain when Ihear her screaming out in agony I know its bad. they admitted her andgave her morphine. well after hours and hours it eased the pain. theproblem is she almost stopped breathing and then almost went into acoma. I saw her yesterday and she didn't even know I was there. she ishaving a bone scan today. Ellen is afraid they won't find anything andsend her home in pain.My questions are does anyone know what this could be? I talked to thenurse I told them it is very frustrating both for the patient and thedoctor because anyone with rp isn't your normal dx. That its hard tofind what it is that's wrong but can't give up. I told them she shouldhave a MRI or cat scan. this I learned from all of you. They can't giveher an MRI they said because Ellen couldn't fit in machine. Ellen wouldkill me if I told you that but I am so worried for her. before she wasdx with rp a doctor told her "gee I really fattened you up on all thesemeds. hah. laugh laugh". She hardly eats,but 26 years on meds can do ajob. there must be something they can do. We don't have drs. withknowledge about rp around here. Our dr. in boston MA. is suppose to bethe best and we are his only two pts. he's had with rp ever. Never mindour pc drs. Mine is a lot better than hers though.Also can you imagine giving her so much morphine we almost lost her.Does anybody have any idea of other pain meds. I am going to try to gether transferred to Boston hospital but I am one tiny person in a bigworld of doctors and insurance co. You have all been there done that Ibet.the other problem is that I am having a flare sense June. My doctor putme on cytoxan and predisone and I was on dapsone, plus 1200 mg ofcalcium a day plus a good vitamin. Just found out I was pushed intoearly menopause. anyway along with all the rp problems, I am sick as adog with the meds. I am trying to push through all the nausea andweakness. but it gets harder and harder. I stopped the calcium andvitamins for a while but didn't help. I have two boys 9 & 12 to keep upwith and I want to be with my sister and fight for her. I have been onthese meds before but not all at once. Can't remember feeling this bad.anyone have any idea's. I do have compazene but it puts me asleep not agood idea.I know ellen and i just joined but wow do we need your input.thanks DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

--- Lang langgang@...> wrote:

> Hi everyone,

>

> I have a couple questions????? As most of you know

> my sister is ellen.

> this past weekend she ended up in the hospital. She

> has been in one

> flare after another but last weds. she felt

> something in her hip. She

> has had many problems with her hips in the past. she

> is in a wheel chair

> when ever possible. (her house is not equipped for

> wheel chair). well,

> as the week went by her pain got worse. by sat.

> morning she called and

> said she was in the worse pain she ever had in her

> life. we told her to

> call the ambulance.(her family was away) I was 41/2

> hours away at my

> other sisters. I only live an hour from ellen and we

> help each other

> out. anyway they took X-rays and nothing broken.of

> course. they don't

> know what's wrong. Her pain is a 15. ellen can take

> a lot of pain when I

> hear her screaming out in agony I know its bad. they

> admitted her and

> gave her morphine. well after hours and hours it

> eased the pain. the

> problem is she almost stopped breathing and then

> almost went into a

> coma. I saw her yesterday and she didn't even know I

> was there. she is

> having a bone scan today. Ellen is afraid they won't

> find anything and

> send her home in pain.

>

> My questions are does anyone know what this could

> be? I talked to the

> nurse I told them it is very frustrating both for

> the patient and the

> doctor because anyone with rp isn't your normal dx.

> That its hard to

> find what it is that's wrong but can't give up. I

> told them she should

> have a MRI or cat scan. this I learned from all of

> you. They can't give

> her an MRI they said because Ellen couldn't fit in

> machine. Ellen would

> kill me if I told you that but I am so worried for

> her. before she was

> dx with rp a doctor told her " gee I really fattened

> you up on all these

> meds. hah. laugh laugh " . She hardly eats,but 26

> years on meds can do a

> job. there must be something they can do. We don't

> have drs. with

> knowledge about rp around here. Our dr. in boston

> MA. is suppose to be

> the best and we are his only two pts. he's had with

> rp ever. Never mind

> our pc drs. Mine is a lot better than hers though.

>

> Also can you imagine giving her so much morphine we

> almost lost her.

> Does anybody have any idea of other pain meds. I am

> going to try to get

> her transferred to Boston hospital but I am one tiny

> person in a big

> world of doctors and insurance co. You have all been

> there done that I

> bet.

>

> the other problem is that I am having a flare sense

> June. My doctor put

> me on cytoxan and predisone and I was on dapsone,

> plus 1200 mg of

> calcium a day plus a good vitamin. Just found out I

> was pushed into

> early menopause. anyway along with all the rp

> problems, I am sick as a

> dog with the meds. I am trying to push through all

> the nausea and

> weakness. but it gets harder and harder. I stopped

> the calcium and

> vitamins for a while but didn't help. I have two

> boys 9 & 12 to keep up

> with and I want to be with my sister and fight for

> her. I have been on

> these meds before but not all at once. Can't

> remember feeling this bad.

> anyone have any idea's. I do have compazene but it

> puts me asleep not a

> good idea.

>

> I know ellen and i just joined but wow do we need

> your input.

>

> thanks

>

>

, so sorry to hear about you and your sister both

having such problems right now. The only thing I can

add to the other excellent suggestions is prayer.

This group seems to do a lot of that. I will

certainly pray for both of you tonight. Sharon

=====

__________________________________________________

[Guest guest]

, I'm so glad that Ellen is finally home... Please give her a big get

well hug from me. You are both in my thoughts... Thanks for the update.

hugs

[Guest guest]

Hi sue Marth,

Sorry it's been so long for a reply. As far as I know Ellen doesn't

have arthritis. As it turned out her hospital transferred her to

Brigham and Woman's hospital in Boston Mass. that's where our dr. works

out of.

Ellen's pain spread to both hips and shoulders. She suffered something

awful. they ran lots and lots of tests. they said she had an extreme

flair up and the doctors would be watching her closer. Of course

nothing is ever black and white with rp and everyone seems to have a difference

of opinion. It drives me nuts. they knew Ellen was in bad shape but

couldn't put names on a lot of findings. Ellen can explain better than

I can. she is finally home! I pray she never feels that much pain ever

again.

I would like to hear more about Dr. Trentham. Where in Boston is he?

Do you go to him? some people Email him. I have never heard of a dr. having

time for that. I would love to hear more.

Ellen and my doctor is Dr. Jack Bukowski,MD.;Ph.D in Rheumatology and

Immunology at the Arthritis Center in brigham And Woman's Hospital.

He only sees pts. once a week and has limited pts.. He is in the Lab most

of the time and studies and such. we are his only pts. with rp.

We were told he was the best and thought by fewer pts and more studies

it was a good thing. but I wonder???? He believes in having all your

specialists and tests done locally and stepping back from things until

he's needed. We see him about every 4-7 weeks. We can call

him anytime but still.......... I think he guesses at the combinations

of meds for Ellen to see what might work. When He saw her in hospital

this time he realized he needs to be more hands on and watch her closer.

I do have good feelings about him though. he seems like he could make some

break threw's for future rp pts. and even for me but at Ellen's expense

I don't know. To bad they couldn't work together.

Sorry this is so long. So much happens to us all nothing is ever

short.

I am still in a flair and the meds are making me still pretty sick to

my stomach. I have to get up and face taking 20 pills every morning.

I am such a baby. Its so hard to keep them all down. I think my pred.

should increase but I think that is what is making me so sick. I also take

cytoxan,that might be it????? Yesterday I was in the beautiful white

mountains eating breakfast and couldn't keep it down. Needless to

say I couldn't keep anything down all day. oh well.

you take care,I hope all is good with you.

julie

grandm4@... wrote:

Dear ,

I'm so sorry about Ellen. Could it be the arthritis has destroyed

her hips or pelvis? Have

you tried to call Dr. Trentham: in

Boston. Just a suggestions.

Please take care or you too. My thoughts are with

you both...Sue Marth

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS,

THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY.

PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED.

WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER

EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK

YOU

[Guest guest]

Dear , so sorry your not feeling good...glad Ellen is home though. Yesterday pcp changed some meds and stomach isn't feeling that great either. Dr. D. Trentham is "the" authority on RP, he's the one who wrote the great articles and researched it. No he's not my doctor but he did call me after an email and I was impressed. He wanted me to come to Boston but I'm financially unable to do that. He also said to call whenever I wanted. So you are so close to him I'd really take advantage of his expertise. E. Trentham

110 Francis St, Suite 5A

Boston, MS 02215

Phone:

Fax:

Email dtrentha@...

Give Ellen my best and will talk to you soon...take care of yourself!!! Sue Marth

[Guest guest]

dear Sandy,

sorry it's ben so long to get back. I think that it's the pred.

that's making me feel so sick. I got sick the first day I took both

the pred and cytoxan . the doctor started me on both together.

I am still feeling pretty lousy.

Ellen did have an open MRI and spent a week in the hospital. she

had a real bad flare. She is home now and will probably update you

when she's up to it.

How are you doing on Cytoxan? Another Dr. told me about Ultram

today. I will ask ellen about it and I am going to check on it for myself

instead of darvecet. Hope your doing good. thanks for caring.

Sandy Catalusci wrote:

,So

sorry to hear you and Ellen are going through so much right now.Maybe

the bone scan will give you some idea of whats going on.Has

Ellen been on Pred for a long time?For

pain I take Ultram and get good results from it.I

agree with , see if you can get the MD. to order an open MRI.I

started taking Cytoxan this morning, I also take 30mg. of Pred. a day.Did

your stomach problems start right away or did the Cytoxan have to build

up in your system before you felt the effects? My Rheumy said if I experience

stomach problems we can try Cytoxan by I.V. Maybe youcan

check with your doc concerning I.V. treatment.Please

try not to get too stressed. I know its hard with Ellen being so sick.Love

Ya,Sandy

Hi

everyone,

I have a couple questions????? As most of you know my sister is

ellen.

this past weekend she ended up in the hospital. She has been in

one

flare after another but last weds. she felt something in her hip.

She

has had many problems with her hips in the past. she is in a wheel

chair

when ever possible. (her house is not equipped for wheel chair).

well,

as the week went by her pain got worse. by sat. morning she called

and

said she was in the worse pain she ever had in her life. we told

her to

call the ambulance.(her family was away) I was 41/2 hours away

at my

other sisters. I only live an hour from ellen and we help each

other

out. anyway they took X-rays and nothing broken.of course.

they don't

know what's wrong. Her pain is a 15. ellen can take a lot of pain

when I

hear her screaming out in agony I know its bad. they admitted her

and

gave her morphine. well after hours and hours it eased the pain.

the

problem is she almost stopped breathing and then almost went into

a

coma. I saw her yesterday and she didn't even know I was there.

she is

having a bone scan today. Ellen is afraid they won't find anything

and

send her home in pain.

My questions are does anyone know what this could be? I talked to

the

nurse I told them it is very frustrating both for the patient and

the

doctor because anyone with rp isn't your normal dx. That its hard

to

find what it is that's wrong but can't give up. I told them she

should

have a MRI or cat scan. this I learned from all of you. They

can't give

her an MRI they said because Ellen couldn't fit in machine. Ellen

would

kill me if I told you that but I am so worried for her. before

she was

dx with rp a doctor told her "gee I really fattened you up on all

these

meds. hah. laugh laugh". She hardly eats,but 26 years on

meds can do a

job. there must be something they can do. We don't have drs. with

knowledge about rp around here. Our dr. in boston MA. is suppose

to be

the best and we are his only two pts. he's had with rp ever. Never

mind

our pc drs. Mine is a lot better than hers though.

Also can you imagine giving her so much morphine we almost lost

her.

Does anybody have any idea of other pain meds. I am going

to try to get

her transferred to Boston hospital but I am one tiny person in

a big

world of doctors and insurance co. You have all been there done

that I

bet.

the other problem is that I am having a flare sense June. My doctor

put

me on cytoxan and predisone and I was on dapsone, plus 1200 mg

of

calcium a day plus a good vitamin. Just found out I was pushed

into

early menopause. anyway along with all the rp problems,

I am sick as a

dog with the meds. I am trying to push through all the nausea and

weakness. but it gets harder and harder. I stopped the calcium

and

vitamins for a while but didn't help. I have two boys 9 & 12

to keep up

with and I want to be with my sister and fight for her. I have

been on

these meds before but not all at once. Can't remember feeling this

bad.

anyone have any idea's. I do have compazene but it puts me asleep

not a

good idea.

I know ellen and i just joined but wow do we need your input.

thanks

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT

IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

, HI, I'm fairly new to this group, but really enjoy it. When you're

on the waiting end it seems to take forever, but then all of a sudden it's

there! I'm sure it'll be a treat to play with your children more. I'm glad

you're excited. I was too.

Joan C, Calif.

LAP RNY 11/18/03

Dr. Higa, Fresno, CA

282/260/140

hi everyone

Hi to all. I have been in this group and have loved everytyhing i

have read. But i thought i would reintro. myself.

My Name is i am 24 and weigh 250lbs. I have 2 young children

agees 3 and 5. And a hubby who is in the navy.

i am suppose to be having my surgery after the first of the year. I

am so excited. is anyone here in VA??????

[Guest guest]

Hi, my name's , I'm 16 years old, and I'm having jaw surgery

(I think it's orthognatic surgery but I'm not technically sure) on

June 17th. I've known for about two years that I would eventually

have to have surgery on my rather bad underbite, but it seemed far

away and not real until I was told the surgery date about a week ago.

ly, I'm terrified. I had been told that I wouldn't have my jaws

wired shut. Now they're talking about wiring them shut for 2 to 3

weeks. Not only that, but they're thinking about taking my wisdom

teeth out while they're at it. ly, I'm terrified, because the

last time I was in the hospital as a patient was when I was born. I

don't do pain well, I've never had surgery, and the idea of them

wiring my jaws shut doesn't sound like much fun either, especially

since I for some reason have problems breathing through my nose.

Actually this message is longer than I intended, and I apologize, but

I think I just want to hear from anybody else who has had this type

of surgery and could give me some advice. Who knew there was a jaw

surgery support group on yahoo! LOL, I think they have groups on here

for everything. Anyway, thanks for any advice you can give me.

Sincerely,

O.

[Guest guest]

valerie...i just had my surgery about 3 weeks ago. its not that

bad. i was scared too, but there really is nothing to worry about.

i have to be wired for the whole 6 weeks so i still have about 3

weeks to go!!! so feel lucky that you will only have to do three.

and the time flies by, really... the first week, you are recovering

and then after that its just a waiting game. but try to do things to

take your mind off of it and you'll do fine. i've actually been able

to mix up some pretty tasty drinks.

as far as being concerned about pain... most people don't really

experience pain. i did a little bit, but they prescribe pain killers

for that. while you're in the hospital, you'll probably be hooked up

to a happy morphine button, which not only helps prevent pain, but

also helps you sleep pretty well.

my only concern for you about this is that you are so young... most

surgeons want you to wait until you've definitely stopped growing to

do the surgery. this prevents future problems, for instance, if your

jaws continue to grow post-op.

i was told as a teenager that i would need this surgery and now, at

26, i finally had it done. i wish i had done it earlier in my

twenties, but alas, i kept putting it off. oh well, its done now and

all i have to look forward to is healing and getting my braces off!

and soon you will be on the other side too... and think what a relief

it will be.

take care,

heather

> Hi, my name's , I'm 16 years old, and I'm having jaw surgery

> (I think it's orthognatic surgery but I'm not technically sure) on

> June 17th. I've known for about two years that I would eventually

> have to have surgery on my rather bad underbite, but it seemed far

> away and not real until I was told the surgery date about a week

ago.

> ly, I'm terrified. I had been told that I wouldn't have my

jaws

> wired shut. Now they're talking about wiring them shut for 2 to 3

> weeks. Not only that, but they're thinking about taking my wisdom

> teeth out while they're at it. ly, I'm terrified, because the

> last time I was in the hospital as a patient was when I was born. I

> don't do pain well, I've never had surgery, and the idea of them

> wiring my jaws shut doesn't sound like much fun either, especially

> since I for some reason have problems breathing through my nose.

> Actually this message is longer than I intended, and I apologize,

but

> I think I just want to hear from anybody else who has had this type

> of surgery and could give me some advice. Who knew there was a jaw

> surgery support group on yahoo! LOL, I think they have groups on

here

> for everything. Anyway, thanks for any advice you can give me.

> Sincerely,

> O.

[Guest guest]

Hi everyone! I know it's been a while. I've been working with my two goofey doctors to get the necessary tests scheduled and done. I don't have the energy to explain the mess that occured with both offices arguing who had "control" of my prescription and who was responsible for the claim... PLEASE!!! I did all the work, and I bet their collecting a few hundred dollars because they picked up the damn phone when I called their office. But don't worry... I'm not bitter or anything. LOL! Two out of the three days, the doctor hadn't faxed in the script to the hospital, and then both offices argued who was responsible to fax it in, delaying me over an hour both times, and one of the girls was extremely rude, snippy and I wanted to reach through the phone and shake her little head silly so she'd fall off of her high horse and lean her ear towards me for a g-d

minute so she would know why I was calling.... INSERT BAD NAME AND NASTY EXPLETIVES HERE...OH, AND HERE... AND HERE, TOO!... I digress... sorry... They did an MRI. Fine. Nothing that shows I've had strokes, no evidence of more lesions in my brain or anything that looks like I've been having seizures. Yay. Oh! And this was the first time they injected the dye and I didn't get nauseous! That was good! They did the EEG of the brain... The readings were "off," so the tech didn't complete the last round of tests. She thinks the machine needed repair. Hmm. But according to my doctor's office today, what tests they did do looked fine. Yay. I think I made a new friend in the tech, though. She and I had a nice chat while she hooked my head up to the machine. We've run into each other a

couple of times since... Long story, but grateful for the blessing. They did the VEPs. Tests usually take 40 minutes. My tech stopped after 10. Said she knew this was bothering me. Said the doctors would have enough with what she had done. She said she wasn't going to turn the lights on because she said she knew they would bother me, felt I had been through enough. That was Friday. Today the doctor's collegue called and left a message in a heavily accented voice: Everything looked "good." What the heck is that?! "Good." The tech said "no more - it's too much." The doctor says, "you're good." Do I live in the twilight zone, or what? Well, I guess I should also mention that when she (the tech) came to get me in the waiting room of Friday, she was upset because her schedule was running behind and her friends were waiting on her in the

cafeteria for lunch.... And just as she finished mucking up my hair with the globs of adhesive they use with the wires, one of her friends popped in to say that their patient wasn't going to make it and she needed to leave the floor to go call his family... Uh...Yeah. Right. Uh huh. Mmmm hmfph. Then the tech said, "So much for lunch, huh?" To be honest, I lost my appetite knowing someone was dying in one of the rooms near me. GEEEEEZ. I HATE WESTERN PENNSYLVANIA MEDICINE!! I'm a God fearing woman, but there are a lot of nasty expletives running through my head that I'm just DYING to spew... I'm so done with all of this. They act like I'm crazy and stupid and weird. EXPLETIVE them!!! I'm telling you, I'm far from perfect, but I am NOT crazy. My husband and Mom are

worried sick and are treating me like I'm two again, now more than ever! I HATE THIS. My 10 year old kept asking me today if my headaches and pain were gone. I told him they were - they really were! I had the first healthy day I've had in ages today. He cried, put his arms around me and said with his little lip quivering, "Let me tell you what's going on, Mom. I prayed for you last night. I prayed that you'd be healed. And then I prayed that I could get the XBOX 360... " Ten. What a cool ten year old, huh? I laughed. I cried. My baby prays for me. How about that? (The XBOX 360? May not happen for a while, but you never know. I'd rather not go there with the video games.) Today, at least, I felt healed. Not only in my head, but also in my heart. ON THE OTHER PROVERBIAL HAND, when the guys go to bed and all the windows are shut and the doors are locked, I fall apart. I cry every single night, and I'm NOT someone who cries, so this is a big deal. I'm scared. Isn't that ridiculous? I can't believe me - "Queen Superfaith" - and here I'm crashing emotionally. I can't handle it. I don't want to handle it anymore. This bites! Tomorrow I'll scoff at how I feel tonight. I'll feel stupid and childish and ashamed because I know better than this. But tonight, I'm crashing inside. I can't hide it. I've been avoiding coming to the support group because - and please forgive me for being so weak - I just don't have the strength sometimes. I am so worried about all of you, and then I see things changing in myself and I become frightened. I hope you

can forgive me. And then the danged doctors say it's nothing, but it IS something - I'm feeling it! I should be rejoicing for the test results! I should be catering a party with family and friends and just celebrating! But I'm more frightened than ever because it doesn't matter what the doctor says, I'm telling you this is real! Please say a little prayer for me today, ok? I'm sorry to dump on everyone. I promise I'll do better next time. I guess we all have our moments. Tell me what's new with everyone... let's get my staring mind off of me for a while, ok? Thanks for putting up with me. I have to go... My husband just woke up to get ready for work. I'm wide awake. I think I'll make him breakfast. Talk with you soon!Love,Jeannie Connie Griffis wrote: Jeannie,I'm like Rose, there may be some seizure problems, butI don't think your going whack city. My cousin usedto have a seizure where she would start standing inone spot and staring and then she would slide to thefloor. They figured it out and she does everythingany one else would do. Here's praying they have a good solution. Please trynot to run to far

into the unknown yet. It's not timefor that, wait till you know what to worry about. Take Care.....Connie--- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------Hi, Jeannie. I'm glad you wrote. I'm too tired tothink straight, but just wanted to respond so youwould know someone was thinking of you tonight. Ihaven't had the experience you've had, but it couldvery well be some type of seizure & needs to beinvestigated. I understand your fear of losingdriving privileges; I have the same fear but fordifferent symptoms. I HATE being dependent on othersto take me places, but I don't know how I would livewith the horror of causing injuring or death tosomeone because my driving was unsafe. Let's assumethat whatever your weird "spells" are, they arecontrollable, allowing you to continue driving.

Right? Right! I'm off to bed now, with Jeannie on mymind. Isn't that a song? Love & prayers fromIndiana,Ramblin' RoseModerator---------------------------------From: Jeanne Betters <gabbysauntienini (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: neurosarcoidosis Subject: Hi everyone -Date: Wed, 2 Aug 2006 23:54:42 -0700 (PDT)Hey there my friends -I've been out of touch - I'm sorry! There were somany emails when I logged on a couple of weeks agothat I gave up and deleted them all.... I hope you'reok and not mad that I deleted - I honestly do care,but I couldn't possibly keep up.Things haven't been ok on my end. Things have

beenvery strained between my husband and I. It's veryinvolved, but nothing I want to delve into right now. I'm very scared. About two months ago I startedhaving these numb feelings in my head.. They didn'thurt, they felt comfortable, actually; I'd stare fora while and then my son or hubby would keep talking tome until I responded. I can hear everything going onaround me, I'm aware, but I don't care because itfeels so comfortable where I'm at... Is that crazy??? Then a couple of mornings ago, I woke up all confusedin the middle of a conversation with my husband at thedoor of our detatched garage... It was dark, I was inmy PJ's and I had no idea how I got there or what theheck we were talking about. He was a little freakedout, to say the least. Well, to make a long storyshort, tonight (last night) he caught me in yetanother "unresponsive stare," as he calls it, and heabsolutely freaked out. He is

adamant that he'staking my vehicle from me and wants me to make anemergency appointment with my PCP for today. He saidhe's going to call me in the morning to remind me andhe'll leave early to take me in. He won't let medrive anywhere, it seems. I am very resentful, but Iguess if the shoe was on the other foot, I'd do thesame. I've had major lapses of memory... I think Itold you about it... He and my son recount storiesthat apparently happened when the three of us weretogether, but I have absolutely no recollection ofit!!! At first, I thought my husband was making thisstuff up to make me think I was crazy (we've had someproblems, so I was sure he was making me out to beworse than I was)... but then one incident where myson got very upset that I didn't remember convinced methat there is more to it than I had believed...ANYWAY...I just spent a little time looking up seizures,because I am thinking

that might be what this is, butI don't know. If any of you have experienced anythinglike this, please share with me... I'm scared. Itdoesn't hurt. It's actually quite nice... I know. Isound nuts, don't I??? I'm afraid I'm slowly losingmy mind or something. I will call the doc in themorning, but tonight I can't sleep because I'mworried. My son has also experienced this with me anumber of times, and it has scared him. Earlier todayit happened when one of his friends was over swimmingand he told her, "there goes my Mom again... She'llbe fine." Ugh... Like I was goofey or something.Am I going to die? Am I going to go goofey orsomething where I can't function? I'm sure my PCPwill run tests if my husband goes with me... What canexpect? Do any of you go through this? Is itcurable? Treatable?Thanks for putting up with me. I feel so stupid andso exposed... And I'd be lying if I said I'm notscared.

I'm scared as heck. My grandfather hadParkinson's... My grandma had poor circulation to herbrain. And I've got neurosarc... Is there anything Ican do to prevent my son from getting this??? Willthey be able to help me so that my life has somenormalcy to it again???I'm sorry, you all. I suddenly am fearing thatthey'll revoke my driving privileges and that I'll becooped up at home without a life forever. I knowthat's stupid, but I'm really scared. I'm sure thedoctor will laugh it off tomorrow as something simpleto treat... but I'm so scared. I feel like all themedical professionals out there just want to drug meand make me go away... and that I just might actuallygo away (mentally!)!!!I hope I am not upsetting anyone. I'm just so scared.And I know if anyone understands, it's all of you.Thank you for being my friends. I don't know what I'ddo without

you.Love,Jeannie---------------------------------Do you Yahoo!?Get on board. You're invited to try the new Yahoo!Mail Beta.---------------------------------It’s the future of Hotmail: Try Windows Live Mailbeta __________________________________________________

[Guest guest]

Welcome back Jeannie, but sorry that you aren't doing so well. I can sympathize with you about all the issues you are having with your drs. It is so hard to get the different specialists or pcps to work together on your case, I know - all the different tests and such. I can also relate to about your son hugging and praying for you. My youngest did the same thing recently (he's 15). They know something is wrong and Mom isn't the same. I hope you improve real soon. And don't worry about comming here we are always here for you. Hugs Debbie Jeanne Betters wrote: Hi everyone! I know it's been a while. I've been working with my two goofey doctors to get the necessary tests scheduled and done. I don't have the energy to explain the mess that occured with both offices arguing who had "control" of my prescription and who was responsible for the claim... PLEASE!!! I did all the work, and I bet their collecting a few hundred dollars because they picked up the damn phone when I called their office. But don't worry... I'm not bitter or anything. LOL! Two out of the three days, the doctor hadn't faxed in the script to the hospital, and then both offices argued who was responsible to fax it in, delaying me over an hour both times, and one of the girls was extremely rude, snippy and I wanted to reach through the phone and shake her little

head silly so she'd fall off of her high horse and lean her ear towards me for a g-d minute so she would know why I was calling.... INSERT BAD NAME AND NASTY EXPLETIVES HERE...OH, AND HERE... AND HERE, TOO!... I digress... sorry... They did an MRI. Fine. Nothing that shows I've had strokes, no evidence of more lesions in my brain or anything that looks like I've been having seizures. Yay. Oh! And this was the first time they injected the dye and I didn't get nauseous! That was good! They did the EEG of the brain... The readings were "off," so the tech didn't complete the last round of tests. She thinks the machine needed repair. Hmm. But according to my doctor's office today, what tests they did do looked fine. Yay. I think I made a new friend in the tech, though. She and

I had a nice chat while she hooked my head up to the machine. We've run into each other a couple of times since... Long story, but grateful for the blessing. They did the VEPs. Tests usually take 40 minutes. My tech stopped after 10. Said she knew this was bothering me. Said the doctors would have enough with what she had done. She said she wasn't going to turn the lights on because she said she knew they would bother me, felt I had been through enough. That was Friday. Today the doctor's collegue called and left a message in a heavily accented voice: Everything looked "good." What the heck is that?! "Good." The tech said "no more - it's too much." The doctor says, "you're good." Do I live in the twilight zone, or what? Well, I guess I should also mention that when she (the tech) came to get me in the waiting room of Friday,

she was upset because her schedule was running behind and her friends were waiting on her in the cafeteria for lunch.... And just as she finished mucking up my hair with the globs of adhesive they use with the wires, one of her friends popped in to say that their patient wasn't going to make it and she needed to leave the floor to go call his family... Uh...Yeah. Right. Uh huh. Mmmm hmfph. Then the tech said, "So much for lunch, huh?" To be honest, I lost my appetite knowing someone was dying in one of the rooms near me. GEEEEEZ. I HATE WESTERN PENNSYLVANIA MEDICINE!! I'm a God fearing woman, but there are a lot of nasty expletives running through my head that I'm just DYING to spew... I'm so done with all of this. They act like I'm crazy and stupid and weird. EXPLETIVE

them!!! I'm telling you, I'm far from perfect, but I am NOT crazy. My husband and Mom are worried sick and are treating me like I'm two again, now more than ever! I HATE THIS. My 10 year old kept asking me today if my headaches and pain were gone. I told him they were - they really were! I had the first healthy day I've had in ages today. He cried, put his arms around me and said with his little lip quivering, "Let me tell you what's going on, Mom. I prayed for you last night. I prayed that you'd be healed. And then I prayed that I could get the XBOX 360... " Ten. What a cool ten year old, huh? I laughed. I cried. My baby prays for me. How about that? (The XBOX 360? May not happen for a while, but you never know. I'd rather not go there with the video

games.) Today, at least, I felt healed. Not only in my head, but also in my heart. ON THE OTHER PROVERBIAL HAND, when the guys go to bed and all the windows are shut and the doors are locked, I fall apart. I cry every single night, and I'm NOT someone who cries, so this is a big deal. I'm scared. Isn't that ridiculous? I can't believe me - "Queen Superfaith" - and here I'm crashing emotionally. I can't handle it. I don't want to handle it anymore. This bites! Tomorrow I'll scoff at how I feel tonight. I'll feel stupid and childish and ashamed because I know better than this. But tonight, I'm crashing inside. I can't hide it. I've been avoiding coming to the support group because - and please forgive me for being so weak - I just don't have the strength sometimes. I am so

worried about all of you, and then I see things changing in myself and I become frightened. I hope you can forgive me. And then the danged doctors say it's nothing, but it IS something - I'm feeling it! I should be rejoicing for the test results! I should be catering a party with family and friends and just celebrating! But I'm more frightened than ever because it doesn't matter what the doctor says, I'm telling you this is real! Please say a little prayer for me today, ok? I'm sorry to dump on everyone. I promise I'll do better next time. I guess we all have our moments. Tell me what's new with everyone... let's get my staring mind off of me for a while, ok? Thanks for putting up with me. I have to go... My husband just woke

up to get ready for work. I'm wide awake. I think I'll make him breakfast. Talk with you soon!Love,Jeannie Connie Griffis wrote: Jeannie,I'm like Rose, there may be some seizure problems, butI don't think your going whack city. My cousin usedto have a seizure where she would start standing inone spot and staring and then she would slide to thefloor. They figured it out and she does everythingany one else would do. Here's praying they have a good solution. Please trynot to run to far into the unknown yet. It's not timefor that, wait till you know what to worry about. Take Care.....Connie--- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------Hi, Jeannie. I'm glad you wrote. I'm too tired tothink straight, but just wanted to respond so youwould know someone was thinking of you tonight. Ihaven't had the experience you've had, but it couldvery well be some type of seizure & needs to beinvestigated. I understand your fear of losingdriving privileges; I have the same fear but fordifferent symptoms. I HATE being dependent on othersto take me places, but I don't know how I would livewith the horror of causing injuring or death tosomeone because my driving was unsafe. Let's assumethat whatever your weird "spells" are, they arecontrollable, allowing you to continue driving. Right? Right! I'm off to bed now, with Jeannie on mymind. Isn't that a song? Love & prayers fromIndiana,Ramblin'

RoseModerator---------------------------------From: Jeanne Betters <gabbysauntienini (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: neurosarcoidosis Subject: Hi everyone -Date: Wed, 2 Aug 2006 23:54:42 -0700 (PDT)Hey there my friends -I've been out of touch - I'm sorry! There were somany emails when I logged on a couple of weeks agothat I gave up and deleted them all.... I hope you'reok and not mad that I deleted - I honestly do care,but I couldn't possibly keep up.Things haven't been ok on my end. Things have beenvery strained between my husband and I. It's veryinvolved, but nothing I want to delve into right now. I'm very scared.

About two months ago I startedhaving these numb feelings in my head.. They didn'thurt, they felt comfortable, actually; I'd stare fora while and then my son or hubby would keep talking tome until I responded. I can hear everything going onaround me, I'm aware, but I don't care because itfeels so comfortable where I'm at... Is that crazy??? Then a couple of mornings ago, I woke up all confusedin the middle of a conversation with my husband at thedoor of our detatched garage... It was dark, I was inmy PJ's and I had no idea how I got there or what theheck we were talking about. He was a little freakedout, to say the least. Well, to make a long storyshort, tonight (last night) he caught me in yetanother "unresponsive stare," as he calls it, and heabsolutely freaked out. He is adamant that he'staking my vehicle from me and wants me to make anemergency appointment with my PCP for today. He saidhe's going to

call me in the morning to remind me andhe'll leave early to take me in. He won't let medrive anywhere, it seems. I am very resentful, but Iguess if the shoe was on the other foot, I'd do thesame. I've had major lapses of memory... I think Itold you about it... He and my son recount storiesthat apparently happened when the three of us weretogether, but I have absolutely no recollection ofit!!! At first, I thought my husband was making thisstuff up to make me think I was crazy (we've had someproblems, so I was sure he was making me out to beworse than I was)... but then one incident where myson got very upset that I didn't remember convinced methat there is more to it than I had believed...ANYWAY...I just spent a little time looking up seizures,because I am thinking that might be what this is, butI don't know. If any of you have experienced anythinglike this, please share with me... I'm scared.

Itdoesn't hurt. It's actually quite nice... I know. Isound nuts, don't I??? I'm afraid I'm slowly losingmy mind or something. I will call the doc in themorning, but tonight I can't sleep because I'mworried. My son has also experienced this with me anumber of times, and it has scared him. Earlier todayit happened when one of his friends was over swimmingand he told her, "there goes my Mom again... She'llbe fine." Ugh... Like I was goofey or something.Am I going to die? Am I going to go goofey orsomething where I can't function? I'm sure my PCPwill run tests if my husband goes with me... What canexpect? Do any of you go through this? Is itcurable? Treatable?Thanks for putting up with me. I feel so stupid andso exposed... And I'd be lying if I said I'm notscared. I'm scared as heck. My grandfather hadParkinson's... My grandma had poor circulation to herbrain. And I've got neurosarc... Is

there anything Ican do to prevent my son from getting this??? Willthey be able to help me so that my life has somenormalcy to it again???I'm sorry, you all. I suddenly am fearing thatthey'll revoke my driving privileges and that I'll becooped up at home without a life forever. I knowthat's stupid, but I'm really scared. I'm sure thedoctor will laugh it off tomorrow as something simpleto treat... but I'm so scared. I feel like all themedical professionals out there just want to drug meand make me go away... and that I just might actuallygo away (mentally!)!!!I hope I am not upsetting anyone. I'm just so scared.And I know if anyone understands, it's all of you.Thank you for being my friends. I don't know what I'ddo without you.Love,Jeannie---------------------------------Do you Yahoo!?Get on board. You're invited to try the new Yahoo!Mail

Beta.---------------------------------It’s the future of Hotmail: Try Windows Live Mailbeta __________________________________________________

[Guest guest]

Jeannie,

So many of the tests they do come back "normal" or "ok." That's because we don't have tests for sarcoidosis. I've come to realize that "normal" just means that what they wanted to see, didn't show up. so if they're thinking epilepsy, or MS, and the tests don't confirm that-- then you're "ok."

I so understand the being scared. It is so hard to know something is going on, and to not be able to have a name for it, or understand any part of it.

This doesn't mean we lack faith, or our trust in god isn't strong enough, or we're evil and being punished. Faith doens't require that we're always strong. It allows us to be weak and to falter, and when we can- we reach out again-- maybe to someone else, and say something or share something that touches another person's soul.

I will tell you you'll get thru this. You don't have any other choice, but to follow this thru. I know this because I've been there, am still there, and am still going thru this-- but alot of miles are behind me, and much of what I'm going thru now, is no longer unfamilar, it's just another level.

Hang in there,

Tracie

NS Co-owner/moderator

[Guest guest]

Jeannie, I am so sorrie for what you are going through right now. I thought for a moment that I had written your email. Why do we all sound somuch alike? You have every right to be afraid and fall apart sometimes and to just cry about what is happening that you have no control over. You know that here you have all the support that each one of us can give you. You are in my prayers, Barb J.Debbie wrote: Welcome back Jeannie, but sorry that you aren't doing so well. I can sympathize with you about all the issues you are having with your drs. It is so hard to get the different specialists or pcps to work together on your case, I know - all the different tests and such. I can also relate

to about your son hugging and praying for you. My youngest did the same thing recently (he's 15). They know something is wrong and Mom isn't the same. I hope you improve real soon. And don't worry about comming here we are always here for you. Hugs Debbie Jeanne Betters wrote: Hi everyone! I know it's been a while. I've been working with my two goofey doctors to get the necessary tests scheduled and done. I don't have the energy to explain the mess that occured with both offices arguing

who had "control" of my prescription and who was responsible for the claim... PLEASE!!! I did all the work, and I bet their collecting a few hundred dollars because they picked up the damn phone when I called their office. But don't worry... I'm not bitter or anything. LOL! Two out of the three days, the doctor hadn't faxed in the script to the hospital, and then both offices argued who was responsible to fax it in, delaying me over an hour both times, and one of the girls was extremely rude, snippy and I wanted to reach through the phone and shake her little head silly so she'd fall off of her high horse and lean her ear towards me for a g-d minute so she would know why I was calling.... INSERT BAD NAME AND NASTY EXPLETIVES HERE...OH, AND HERE... AND HERE, TOO!... I digress... sorry... They did an MRI. Fine. Nothing that shows I've had

strokes, no evidence of more lesions in my brain or anything that looks like I've been having seizures. Yay. Oh! And this was the first time they injected the dye and I didn't get nauseous! That was good! They did the EEG of the brain... The readings were "off," so the tech didn't complete the last round of tests. She thinks the machine needed repair. Hmm. But according to my doctor's office today, what tests they did do looked fine. Yay. I think I made a new friend in the tech, though. She and I had a nice chat while she hooked my head up to the machine. We've run into each other a couple of times since... Long story, but grateful for the blessing. They did the VEPs. Tests usually take 40 minutes. My tech stopped after 10. Said she knew this was bothering

me. Said the doctors would have enough with what she had done. She said she wasn't going to turn the lights on because she said she knew they would bother me, felt I had been through enough. That was Friday. Today the doctor's collegue called and left a message in a heavily accented voice: Everything looked "good." What the heck is that?! "Good." The tech said "no more - it's too much." The doctor says, "you're good." Do I live in the twilight zone, or what? Well, I guess I should also mention that when she (the tech) came to get me in the waiting room of Friday, she was upset because her schedule was running behind and her friends were waiting on her in the cafeteria for lunch.... And just as she finished mucking up my hair with the globs of adhesive they use with the wires, one of her friends popped in to say that their patient wasn't going to make it and she needed to leave the floor to

go call his family... Uh...Yeah. Right. Uh huh. Mmmm hmfph. Then the tech said, "So much for lunch, huh?" To be honest, I lost my appetite knowing someone was dying in one of the rooms near me. GEEEEEZ. I HATE WESTERN PENNSYLVANIA MEDICINE!! I'm a God fearing woman, but there are a lot of nasty expletives running through my head that I'm just DYING to spew... I'm so done with all of this. They act like I'm crazy and stupid and weird. EXPLETIVE them!!! I'm telling you, I'm far from perfect, but I am NOT crazy. My husband and Mom are worried sick and are treating me like I'm two again, now more than ever! I HATE THIS. My 10 year old kept asking me today if my headaches and pain were gone. I told him they were

- they really were! I had the first healthy day I've had in ages today. He cried, put his arms around me and said with his little lip quivering, "Let me tell you what's going on, Mom. I prayed for you last night. I prayed that you'd be healed. And then I prayed that I could get the XBOX 360... " Ten. What a cool ten year old, huh? I laughed. I cried. My baby prays for me. How about that? (The XBOX 360? May not happen for a while, but you never know. I'd rather not go there with the video games.) Today, at least, I felt healed. Not only in my head, but also in my heart. ON THE OTHER PROVERBIAL HAND, when the guys go to bed and all the windows are shut and the doors are locked, I fall apart. I cry every single night, and I'm NOT someone who cries, so this is a big deal. I'm

scared. Isn't that ridiculous? I can't believe me - "Queen Superfaith" - and here I'm crashing emotionally. I can't handle it. I don't want to handle it anymore. This bites! Tomorrow I'll scoff at how I feel tonight. I'll feel stupid and childish and ashamed because I know better than this. But tonight, I'm crashing inside. I can't hide it. I've been avoiding coming to the support group because - and please forgive me for being so weak - I just don't have the strength sometimes. I am so worried about all of you, and then I see things changing in myself and I become frightened. I hope you can forgive me. And then the danged doctors say it's nothing, but it IS something - I'm feeling it! I should be rejoicing for the test results! I should

be catering a party with family and friends and just celebrating! But I'm more frightened than ever because it doesn't matter what the doctor says, I'm telling you this is real! Please say a little prayer for me today, ok? I'm sorry to dump on everyone. I promise I'll do better next time. I guess we all have our moments. Tell me what's new with everyone... let's get my staring mind off of me for a while, ok? Thanks for putting up with me. I have to go... My husband just woke up to get ready for work. I'm wide awake. I think I'll make him breakfast. Talk with you soon!Love,Jeannie Connie Griffis wrote: Jeannie,I'm like Rose, there may be some seizure problems, butI don't think your going whack city. My cousin usedto have a seizure where she would start standing inone spot and staring and then she would slide to thefloor. They figured it out and she does everythingany one else would do. Here's praying they have a good solution. Please trynot to run to far into the unknown yet. It's not timefor that, wait till you know what to worry about. Take Care.....Connie--- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------Hi, Jeannie. I'm glad you wrote. I'm too tired tothink straight, but just wanted to respond so youwould know someone was thinking of you tonight. Ihaven't had the experience you've had, but it couldvery well be some

type of seizure & needs to beinvestigated. I understand your fear of losingdriving privileges; I have the same fear but fordifferent symptoms. I HATE being dependent on othersto take me places, but I don't know how I would livewith the horror of causing injuring or death tosomeone because my driving was unsafe. Let's assumethat whatever your weird "spells" are, they arecontrollable, allowing you to continue driving. Right? Right! I'm off to bed now, with Jeannie on mymind. Isn't that a song? Love & prayers fromIndiana,Ramblin' RoseModerator---------------------------------From: Jeanne Betters <gabbysauntienini (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: neurosarcoidosis Subject: Hi everyone -Date: Wed, 2 Aug 2006 23:54:42 -0700 (PDT)Hey there my friends -I've been out of touch - I'm sorry! There were somany emails when I logged on a couple of weeks agothat I gave up and deleted them all.... I hope you'reok and not mad that I deleted - I honestly do care,but I couldn't possibly keep up.Things haven't been ok on my end. Things have beenvery strained between my husband and I. It's veryinvolved, but nothing I want to delve into right now. I'm very scared. About two months ago I startedhaving these numb feelings in my head.. They didn'thurt, they felt comfortable, actually; I'd stare fora while and then my son or hubby would keep talking tome until I responded. I can hear everything going onaround me, I'm aware, but I don't care because itfeels

so comfortable where I'm at... Is that crazy??? Then a couple of mornings ago, I woke up all confusedin the middle of a conversation with my husband at thedoor of our detatched garage... It was dark, I was inmy PJ's and I had no idea how I got there or what theheck we were talking about. He was a little freakedout, to say the least. Well, to make a long storyshort, tonight (last night) he caught me in yetanother "unresponsive stare," as he calls it, and heabsolutely freaked out. He is adamant that he'staking my vehicle from me and wants me to make anemergency appointment with my PCP for today. He saidhe's going to call me in the morning to remind me andhe'll leave early to take me in. He won't let medrive anywhere, it seems. I am very resentful, but Iguess if the shoe was on the other foot, I'd do thesame. I've had major lapses of memory... I think Itold you about it... He and my son recount

storiesthat apparently happened when the three of us weretogether, but I have absolutely no recollection ofit!!! At first, I thought my husband was making thisstuff up to make me think I was crazy (we've had someproblems, so I was sure he was making me out to beworse than I was)... but then one incident where myson got very upset that I didn't remember convinced methat there is more to it than I had believed...ANYWAY...I just spent a little time looking up seizures,because I am thinking that might be what this is, butI don't know. If any of you have experienced anythinglike this, please share with me... I'm scared. Itdoesn't hurt. It's actually quite nice... I know. Isound nuts, don't I??? I'm afraid I'm slowly losingmy mind or something. I will call the doc in themorning, but tonight I can't sleep because I'mworried. My son has also experienced this with me anumber of times, and it has scared

him. Earlier todayit happened when one of his friends was over swimmingand he told her, "there goes my Mom again... She'llbe fine." Ugh... Like I was goofey or something.Am I going to die? Am I going to go goofey orsomething where I can't function? I'm sure my PCPwill run tests if my husband goes with me... What canexpect? Do any of you go through this? Is itcurable? Treatable?Thanks for putting up with me. I feel so stupid andso exposed... And I'd be lying if I said I'm notscared. I'm scared as heck. My grandfather hadParkinson's... My grandma had poor circulation to herbrain. And I've got neurosarc... Is there anything Ican do to prevent my son from getting this??? Willthey be able to help me so that my life has somenormalcy to it again???I'm sorry, you all. I suddenly am fearing thatthey'll revoke my driving privileges and that I'll becooped up at home without a life forever. I

knowthat's stupid, but I'm really scared. I'm sure thedoctor will laugh it off tomorrow as something simpleto treat... but I'm so scared. I feel like all themedical professionals out there just want to drug meand make me go away... and that I just might actuallygo away (mentally!)!!!I hope I am not upsetting anyone. I'm just so scared.And I know if anyone understands, it's all of you.Thank you for being my friends. I don't know what I'ddo without you.Love,Jeannie---------------------------------Do you Yahoo!?Get on board. You're invited to try the new Yahoo!Mail Beta.---------------------------------It?s the future of Hotmail: Try Windows Live Mailbeta __________________________________________________

[Guest guest]

Oh Jeanne, Please, Please don't ever apologize for the way this mess makes you feel. Hey even Elijah got way down, and God sent an angle to comfort & take care of him. I will be praying & already have been. And no you are not crazy, I think we all know exactly what you mean about knowing something is wrong, and knowing that the test results aren't worth the paper they are written on sometimes. Please don't give up, take care of yourself and step back away from it for a minute. I see battling sarcoid sometimes like being a soldier in a trench in the middle of a heated battle. You get pounded and bombed so long, and you get so tired after a while you feel like you just can't stand anymore. That's usually when I have to back up & hide in my perverbial cave for a little bit, rest & give my body, mind & soul a chance to regroup. Thanks to

the Lord & the people who love me, I can usually resume battle after this. Hugs, a shoulder should you need it, ears that listen, a heart that cares & my prayers/////ConnieJeanne Betters wrote: Hi everyone! I know it's been a while. I've been working with my two goofey doctors to get the necessary tests scheduled and done. I don't have the energy to explain the mess that occured with both

offices arguing who had "control" of my prescription and who was responsible for the claim... PLEASE!!! I did all the work, and I bet their collecting a few hundred dollars because they picked up the damn phone when I called their office. But don't worry... I'm not bitter or anything. LOL! Two out of the three days, the doctor hadn't faxed in the script to the hospital, and then both offices argued who was responsible to fax it in, delaying me over an hour both times, and one of the girls was extremely rude, snippy and I wanted to reach through the phone and shake her little head silly so she'd fall off of her high horse and lean her ear towards me for a g-d minute so she would know why I was calling.... INSERT BAD NAME AND NASTY EXPLETIVES HERE...OH, AND HERE... AND HERE, TOO!... I digress... sorry... They did an MRI. Fine. Nothing that shows

I've had strokes, no evidence of more lesions in my brain or anything that looks like I've been having seizures. Yay. Oh! And this was the first time they injected the dye and I didn't get nauseous! That was good! They did the EEG of the brain... The readings were "off," so the tech didn't complete the last round of tests. She thinks the machine needed repair. Hmm. But according to my doctor's office today, what tests they did do looked fine. Yay. I think I made a new friend in the tech, though. She and I had a nice chat while she hooked my head up to the machine. We've run into each other a couple of times since... Long story, but grateful for the blessing. They did the VEPs. Tests usually take 40 minutes. My tech stopped after 10. Said she knew this was bothering

me. Said the doctors would have enough with what she had done. She said she wasn't going to turn the lights on because she said she knew they would bother me, felt I had been through enough. That was Friday. Today the doctor's collegue called and left a message in a heavily accented voice: Everything looked "good." What the heck is that?! "Good." The tech said "no more - it's too much." The doctor says, "you're good." Do I live in the twilight zone, or what? Well, I guess I should also mention that when she (the tech) came to get me in the waiting room of Friday, she was upset because her schedule was running behind and her friends were waiting on her in the cafeteria for lunch.... And just as she finished mucking up my hair with the globs of adhesive they use with the wires, one of her friends popped in to say that their patient wasn't going to make it and she needed to leave the floor to

go call his family... Uh...Yeah. Right. Uh huh. Mmmm hmfph. Then the tech said, "So much for lunch, huh?" To be honest, I lost my appetite knowing someone was dying in one of the rooms near me. GEEEEEZ. I HATE WESTERN PENNSYLVANIA MEDICINE!! I'm a God fearing woman, but there are a lot of nasty expletives running through my head that I'm just DYING to spew... I'm so done with all of this. They act like I'm crazy and stupid and weird. EXPLETIVE them!!! I'm telling you, I'm far from perfect, but I am NOT crazy. My husband and Mom are worried sick and are treating me like I'm two again, now more than ever! I HATE THIS. My 10 year old kept asking me today if my headaches and pain were gone. I told him they were

- they really were! I had the first healthy day I've had in ages today. He cried, put his arms around me and said with his little lip quivering, "Let me tell you what's going on, Mom. I prayed for you last night. I prayed that you'd be healed. And then I prayed that I could get the XBOX 360... " Ten. What a cool ten year old, huh? I laughed. I cried. My baby prays for me. How about that? (The XBOX 360? May not happen for a while, but you never know. I'd rather not go there with the video games.) Today, at least, I felt healed. Not only in my head, but also in my heart. ON THE OTHER PROVERBIAL HAND, when the guys go to bed and all the windows are shut and the doors are locked, I fall apart. I cry every single night, and I'm NOT someone who cries, so this is a big deal. I'm

scared. Isn't that ridiculous? I can't believe me - "Queen Superfaith" - and here I'm crashing emotionally. I can't handle it. I don't want to handle it anymore. This bites! Tomorrow I'll scoff at how I feel tonight. I'll feel stupid and childish and ashamed because I know better than this. But tonight, I'm crashing inside. I can't hide it. I've been avoiding coming to the support group because - and please forgive me for being so weak - I just don't have the strength sometimes. I am so worried about all of you, and then I see things changing in myself and I become frightened. I hope you can forgive me. And then the danged doctors say it's nothing, but it IS something - I'm feeling it! I should be rejoicing for the test results! I should

be catering a party with family and friends and just celebrating! But I'm more frightened than ever because it doesn't matter what the doctor says, I'm telling you this is real! Please say a little prayer for me today, ok? I'm sorry to dump on everyone. I promise I'll do better next time. I guess we all have our moments. Tell me what's new with everyone... let's get my staring mind off of me for a while, ok? Thanks for putting up with me. I have to go... My husband just woke up to get ready for work. I'm wide awake. I think I'll make him breakfast. Talk with you soon!Love,Jeannie Connie Griffis <conaugusta (AT) yahoo (DOT) com> wrote: Jeannie,I'm like Rose, there may be some seizure problems, butI don't think your going whack city. My cousin usedto have a seizure where she would start standing inone spot and staring and then she would slide to thefloor. They figured it out and she does everythingany one else would do. Here's praying they have a good solution. Please trynot to run to far into the unknown yet. It's not timefor that, wait till you know what to worry about. Take Care.....Connie--- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------Hi, Jeannie. I'm glad you wrote. I'm too tired tothink straight, but just wanted to respond so youwould know someone was thinking of you tonight. Ihaven't had the experience you've had, but it couldvery well be some type of seizure & needs to

beinvestigated. I understand your fear of losingdriving privileges; I have the same fear but fordifferent symptoms. I HATE being dependent on othersto take me places, but I don't know how I would livewith the horror of causing injuring or death tosomeone because my driving was unsafe. Let's assumethat whatever your weird "spells" are, they arecontrollable, allowing you to continue driving. Right? Right! I'm off to bed now, with Jeannie on mymind. Isn't that a song? Love & prayers fromIndiana,Ramblin' RoseModerator---------------------------------From: Jeanne Betters <gabbysauntienini (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: neurosarcoidosis Subject:

Hi everyone -Date: Wed, 2 Aug 2006 23:54:42 -0700 (PDT)Hey there my friends -I've been out of touch - I'm sorry! There were somany emails when I logged on a couple of weeks agothat I gave up and deleted them all.... I hope you'reok and not mad that I deleted - I honestly do care,but I couldn't possibly keep up.Things haven't been ok on my end. Things have beenvery strained between my husband and I. It's veryinvolved, but nothing I want to delve into right now. I'm very scared. About two months ago I startedhaving these numb feelings in my head.. They didn'thurt, they felt comfortable, actually; I'd stare fora while and then my son or hubby would keep talking tome until I responded. I can hear everything going onaround me, I'm aware, but I don't care because itfeels so comfortable where I'm at... Is that crazy??? Then a couple of mornings ago, I woke up all

confusedin the middle of a conversation with my husband at thedoor of our detatched garage... It was dark, I was inmy PJ's and I had no idea how I got there or what theheck we were talking about. He was a little freakedout, to say the least. Well, to make a long storyshort, tonight (last night) he caught me in yetanother "unresponsive stare," as he calls it, and heabsolutely freaked out. He is adamant that he'staking my vehicle from me and wants me to make anemergency appointment with my PCP for today. He saidhe's going to call me in the morning to remind me andhe'll leave early to take me in. He won't let medrive anywhere, it seems. I am very resentful, but Iguess if the shoe was on the other foot, I'd do thesame. I've had major lapses of memory... I think Itold you about it... He and my son recount storiesthat apparently happened when the three of us weretogether, but I have absolutely no

recollection ofit!!! At first, I thought my husband was making thisstuff up to make me think I was crazy (we've had someproblems, so I was sure he was making me out to beworse than I was)... but then one incident where myson got very upset that I didn't remember convinced methat there is more to it than I had believed...ANYWAY...I just spent a little time looking up seizures,because I am thinking that might be what this is, butI don't know. If any of you have experienced anythinglike this, please share with me... I'm scared. Itdoesn't hurt. It's actually quite nice... I know. Isound nuts, don't I??? I'm afraid I'm slowly losingmy mind or something. I will call the doc in themorning, but tonight I can't sleep because I'mworried. My son has also experienced this with me anumber of times, and it has scared him. Earlier todayit happened when one of his friends was over swimmingand he told her,

"there goes my Mom again... She'llbe fine." Ugh... Like I was goofey or something.Am I going to die? Am I going to go goofey orsomething where I can't function? I'm sure my PCPwill run tests if my husband goes with me... What canexpect? Do any of you go through this? Is itcurable? Treatable?Thanks for putting up with me. I feel so stupid andso exposed... And I'd be lying if I said I'm notscared. I'm scared as heck. My grandfather hadParkinson's... My grandma had poor circulation to herbrain. And I've got neurosarc... Is there anything Ican do to prevent my son from getting this??? Willthey be able to help me so that my life has somenormalcy to it again???I'm sorry, you all. I suddenly am fearing thatthey'll revoke my driving privileges and that I'll becooped up at home without a life forever. I knowthat's stupid, but I'm really scared. I'm sure thedoctor will laugh it off tomorrow

as something simpleto treat... but I'm so scared. I feel like all themedical professionals out there just want to drug meand make me go away... and that I just might actuallygo away (mentally!)!!!I hope I am not upsetting anyone. I'm just so scared.And I know if anyone understands, it's all of you.Thank you for being my friends. I don't know what I'ddo without you.Love,Jeannie---------------------------------Do you Yahoo!?Get on board. You're invited to try the new Yahoo!Mail Beta.---------------------------------It’s the future of Hotmail: Try Windows Live Mailbeta __________________________________________________

[Guest guest]

Jeanne,

Even the

most faithful of people have doubtful days, Remember even Jesus asked why his

father abandoned him? There are times it is really hard to stay faithful, I have

those days too, we all do, we are just humans.

Your story sounds much

like mine, tests all normal, but I knew I was far from normal and didn’t

stop until someone said I believe you and will treat you, that was 2 years ago,

but after several months of tests and running from one doctor to another.

Faith, if we could just

have the faith of our children, your son healed you, didn’t your heart

just feel like it would explode with love for your son when he said that, what

a blessing you have. I am glad you had a better day, if your son keeps

praying it can only get better, as Jesus loves the children so much, he hears

all their prayers.

I too am praying for you,

for answers, for pain free days, for more special moments.

Marla

Jeanne Betters

<gabbysauntienini (AT) yahoo (DOT) com> wrote:

Hi everyone!

I know it's been a while. I've been working with my two goofey

doctors to get the necessary tests scheduled and done. I don't have the

energy to explain the mess that occured with both offices arguing who had

" control " of my prescription and who was responsible for the claim...

PLEASE!!! I did all the work, and I bet their collecting a few

hundred dollars because they picked up the damn phone when I called their

office. But don't worry... I'm not bitter or anything. LOL!

Two out of the three days, the doctor hadn't faxed in the script to the

hospital, and then both offices argued who was responsible to fax it

in, delaying me over an hour both times, and one of the girls was

extremely rude, snippy and I wanted to reach through the phone and shake her

little head silly so she'd fall off of her high horse and lean her

ear towards me for a g-d minute so she would know why I was calling.... INSERT

BAD NAME AND NASTY EXPLETIVES HERE...OH, AND HERE... AND HERE,

TOO!... I digress... sorry...

They did an MRI. Fine. Nothing that shows I've had strokes,

no evidence of more lesions in my brain or anything that looks like

I've been having seizures. Yay. Oh! And this was the first time

they injected the dye and I didn't get nauseous! That was good!

They did the EEG of the brain... The readings were

" off, " so the tech didn't complete the last round of tests. She

thinks the machine needed repair. Hmm. But according to my doctor's office today, what tests

they did do looked fine. Yay. I think I made a new friend in the

tech, though. She and I had a nice chat while she hooked my head up to

the machine. We've run into each other a couple of times

since... Long story, but grateful for the blessing.

They did the VEPs. Tests usually take 40 minutes. My

tech stopped after 10. Said she knew this was bothering me. Said the

doctors would have enough with what she had done. She said she wasn't

going to turn the lights on because she said she knew they would bother me,

felt I had been through enough. That was Friday. Today the doctor's

collegue called and left a message in a heavily accented voice: Everything

looked " good. " What the heck is that?! " Good. " The tech said " no

more - it's too much. " The doctor says, " you're

good. " Do I live in the twilight zone, or what? Well, I guess

I should also mention that when she (the tech) came to get me in the waiting

room of Friday, she was upset because her schedule was running behind and her

friends were waiting on her in the cafeteria for lunch.... And just as

she finished mucking up my hair with the globs of adhesive they use with the

wires, one of her friends popped in to say that their patient wasn't going to

make it and she needed to leave the floor to go call his family... Uh...Yeah. Right. Uh huh.

Mmmm hmfph.

Then the tech said, " So much for lunch, huh? " To be honest, I

lost my appetite knowing

someone was dying in one of the rooms near me. GEEEEEZ.

I HATE WESTERN PENNSYLVANIA MEDICINE!!

I'm a God fearing woman, but there are a lot of nasty expletives

running through my head that I'm just DYING to spew... I'm so done with

all of this. They act like I'm crazy and stupid and weird.

EXPLETIVE them!!! I'm telling you, I'm far from perfect, but I am NOT

crazy. My husband and Mom are worried sick and are treating me like I'm two again, now more than

ever! I HATE THIS.

My 10 year old kept asking me today if my headaches and pain were

gone. I told him they were - they really

were! I had the first healthy day I've had in ages today. He cried, put his arms

around me and said with his little lip quivering, " Let me tell you what's

going on, Mom. I prayed for you last night. I prayed that you'd be

healed. And then I prayed that I could get the XBOX 360... " Ten. What a cool ten year old,

huh? I laughed. I cried. My

baby prays for me. How about that? (The XBOX 360? May not

happen for a while, but you never know. I'd rather not go

there with the video games.) Today, at least, I felt

healed. Not only in my head, but also in my heart.

ON THE OTHER PROVERBIAL HAND, when the guys go to bed and all the

windows are shut and the doors are locked, I fall apart. I cry every

single night, and I'm NOT someone who cries, so this is a big deal. I'm

scared. Isn't that ridiculous? I can't believe me

- " Queen Superfaith " - and here I'm crashing emotionally.

I can't handle it. I don't want to handle it anymore. This

bites!

Tomorrow I'll scoff at how I feel tonight. I'll feel stupid and

childish and ashamed because I know better than this. But tonight, I'm

crashing inside. I can't hide it.

I've been avoiding coming to the support group because - and please

forgive me for being so weak - I just don't have the strength sometimes.

I am so worried about all of you, and then I see things changing in myself and

I become frightened. I hope you can forgive me.

And then the danged doctors say it's nothing,

but it IS something - I'm feeling it! I should be rejoicing

for the test results! I should be catering a party with family and

friends and just celebrating! But I'm more frightened than ever because

it doesn't matter what the doctor says, I'm

telling you this is real!

Please say a little prayer for me today, ok? I'm sorry to dump on

everyone. I promise I'll do better next time. I guess we all have

our moments.

Tell me what's new with everyone... let's get my staring mind off of me

for a while, ok?

Thanks for putting up with me. I have to go... My husband just

woke up to get ready for work. I'm wide awake. I think I'll make

him breakfast.

Talk with you soon!

Love,

Jeannie

Connie Griffis

<conaugusta (AT) yahoo (DOT) com> wrote:

Jeannie,

I'm like Rose, there may be some seizure problems, but

I don't think your going whack city. My cousin used

to have a seizure where she would start standing in

one spot and staring and then she would slide to the

floor. They figured it out and she does everything

any one else would do.

Here's praying they have a good solution. Please try

not to run to far into the unknown yet. It's not time

for that, wait till you know what to worry about.

Take Care.....Connie

--- Rose <mamadogrose (AT) hotmail (DOT) com>

wrote:

---------------------------------

Hi, Jeannie. I'm glad you wrote. I'm too tired to

think straight, but just wanted to respond so you

would know someone was thinking of you tonight. I

haven't had the experience you've had, but it could

very well be some type of seizure & needs to be

investigated. I understand your fear of losing

driving privileges; I have the same fear but for

different symptoms. I HATE being dependent on others

to take me places, but I don't know how I would live

with the horror of causing injuring or death to

someone because my driving was unsafe. Let's assume

that whatever your weird " spells " are, they are

controllable, allowing you to continue driving.

Right? Right! I'm off to bed now, with Jeannie on my

mind. Isn't that a song? Love & prayers from

Indiana,

Ramblin' Rose

Moderator

---------------------------------

From: Jeanne Betters <gabbysauntienini (AT) yahoo (DOT) com>

Reply-To: Neurosarcoidosis

To: neurosarcoidosis

Subject: Hi everyone -

Date: Wed, 2 Aug 2006 23:54:42 -0700 (PDT)

Hey there my friends -

I've been out of touch - I'm sorry! There were so

many emails when I logged on a couple of weeks ago

that I gave up and deleted them all.... I hope you're

ok and not mad that I deleted - I honestly do care,

but I couldn't possibly keep up.

Things haven't been ok on my end. Things have been

very strained between my husband and I. It's very

involved, but nothing I want to delve into right now.

I'm very scared. About two months ago I started

having these numb feelings in my head.. They didn't

hurt, they felt comfortable, actually; I'd stare for

a while and then my son or hubby would keep talking to

me until I responded. I can hear everything going on

around me, I'm aware, but I don't care because it

feels so comfortable where I'm at... Is that crazy???

Then a couple of mornings ago, I woke up all confused

in the middle of a conversation with my husband at the

door of our detatched garage... It was dark, I was in

my PJ's and I had no idea how I got there or what the

heck we were talking about. He was a little freaked

out, to say the least. Well, to make a long story

short, tonight (last night) he caught me in yet

another " unresponsive stare, " as he calls it, and he

absolutely freaked out. He is adamant that he's

taking my vehicle from me and wants me to make an

emergency appointment with my PCP for today. He said

he's going to call me in the morning to remind me and

he'll leave early to take me in. He won't let me

drive anywhere, it seems. I am very resentful, but I

guess if the shoe was on the other foot, I'd do the

same. I've had major lapses of memory... I think I

told you about it... He and my son recount stories

that apparently happened when the three of us were

together, but I have absolutely no recollection of

it!!! At first, I thought my husband was making this

stuff up to make me think I was crazy (we've had some

problems, so I was sure he was making me out to be

worse than I was)... but then one incident where my

son got very upset that I didn't remember convinced me

that there is more to it than I had believed...

ANYWAY...

I just spent a little time looking up seizures,

because I am thinking that might be what this is, but

I don't know. If any of you have experienced anything

like this, please share with me... I'm scared. It

doesn't hurt. It's actually quite nice... I know. I

sound nuts, don't I??? I'm afraid I'm slowly losing

my mind or something. I will call the doc in the

morning, but tonight I can't sleep because I'm

worried. My son has also experienced this with me a

number of times, and it has scared him. Earlier today

it happened when one of his friends was over swimming

and he told her, " there goes my Mom again... She'll

be fine. " Ugh... Like I was goofey or something.

Am I going to die? Am I going to go goofey or

something where I can't function? I'm sure my PCP

will run tests if my husband goes with me... What can

expect? Do any of you go through this? Is it

curable? Treatable?

Thanks for putting up with me. I feel so stupid and

so exposed... And I'd be lying if I said I'm not

scared. I'm scared as heck. My grandfather had

Parkinson's... My grandma had poor circulation to her

brain. And I've got neurosarc... Is there anything I

can do to prevent my son from getting this??? Will

they be able to help me so that my life has some

normalcy to it again???

I'm sorry, you all. I suddenly am fearing that

they'll revoke my driving privileges and that I'll be

cooped up at home without a life forever. I know

that's stupid, but I'm really scared. I'm sure the

doctor will laugh it off tomorrow as something simple

to treat... but I'm so scared. I feel like all the

medical professionals out there just want to drug me

and make me go away... and that I just might actually

go away (mentally!)!!!

I hope I am not upsetting anyone. I'm just so scared.

And I know if anyone understands, it's all of you.

Thank you for being my friends. I don't know what I'd

do without you.

Love,

Jeannie

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