Replies to all

August 20, 2004

Toni, first are you on Methotrexate? If so that explains the sore mouth, hair loss are associated with mwthotrexate all at once. Dr.B told me to stop taking Methotrexate for two weeks, then start up again with one pill a day for 4 days straight and then off three. I am also taking Folic Acid 2 800mcg capsules a day everyday including the days I am not on the Metho. No more sore mouth.

If you are on Plaquenil, you may have a problem with the vision. This is why we have a Visual Fields test done along with a fungal test on the eyes.

If any one is on Plaquenil, do not eat in ground vegetables unless you wash, parboil, drain, rinse, and par boil again.

Sharon

Toni wrote:

My first visit to the Immunologist: He more or less told me that my hair loss, pain, unbalance, vision problems and everything else that I am suffering is all in my head and he recommends that I go see a psychiatrist. He said he doesn't believe I have any sort of life threatening illness and I should get off the prednisone reducing it by 1mg every 2 weeks and get out and exercise and I will feel better. The only way I will get over this is to have a better attitude and fix myself. So I have totally, and I mean totally, given up on these bloody friggin quacks. I thought that he might have been able to help me but he didn't offer me blood tests, sputum tests on this ever present nagging cough which a chest x-ray came up clear. He also told me not to bother seeking out other physicians because they won't find

anything wrong with me either. So I feel totally alone with this thing, and only my GP appears to be on my side. I feel like I have to just wait now until some other symptom rears its ugly head like another seizure or bells palsy episode before they will do ANY thing more in the way of investigations. I've hit a brick wall and all these hospital doctors stick together. Just by comments he made I know that they have all been talking about me between themselves. So not sure what to do now. Really hanging on to my purple bootstraps at the moment.Happy birthday NabellaHope your special day was great and pain free for you. :)Hi JudySorry to hear about the ongoing saga with your knee. Hang in there and I hope things improve quickly for you. Sending you healing thoughts and prayers. :)Quick question to the administrators of our wonderful family here, when I get

messages in the digest email that say [This message contained attachments], how do I view them???????? I'd love to see the pictures or photos that are attached to messages from time to time.Hi MarlaI'm sorry to hear that you are in lots of pain at the moment. I hope it eases up a little for you soon. I get those little red scaly sore spots when I go in the sun too. I hate them and living in the Sunshine State of Australia, doesn't help them at all Some of the dr's have said that they are from the prednisone but I know that I only get these particular ones when I go out in the sun or go anywhere during the day for that matter as the sun is so strong and damaging here and the sunscreen makes them itch and burn even more.As Reneness mentioned, I find that meditation every day has helped a little with pain and relaxation, I usually put my headphones at bedtime and just play it all

night. Usually after the first 15 mins I find myself being relaxed enough to fall asleep but then its only an hour or two that these little mini electric shocks jolt me back awake and I have to get out of bed and wander out to the loungeroom to watch TV or fiddle around on my computer, closing all the doors and keeping lights off so I don't wake everyone else up too. My partner usually ends up waking up when he's aware that I'm not in bed so that kind of makes me feel guilty, but I just CAN'T stay in bed and lie there when I'm wide awake.I am soooo very very sorry to hear about your sad loss and more so for you friend Ginger. I will keep her, her family and you in my thoughts and prayers. I hope that Ginger and her son can bond together and wrap each other up in consolation and that all her friends can do so as well and help each other through this most terrible time.Hi DebbieI haven't tried any

sort of patches. I don't even know if they are available here in OZ but I too have found that a combination of two pain meds work better than just one. Don't know why, one of those mysteries of life I guess :)Dear RenenessALL THAT STRESS!!!! Life is just not fair sometimes. I have been saving and saving for so long to get something for myself and had just finally got the money, and the bloody window winding mechanism on my car broke today so I had to go and get a quote to get it fixed and there goes my $200. I feel so damn cheated all the time. If it isn't something that goes wrong that needs fixing, its something for my kids or an unexpectedly high bill that my kids have run up. It just isn't a very good period for me right now as nothing seems to be going my way. I hope that changes real soon for the better. I know what it's like to be always worrying about everyone else's

needs and well-being before my own, just a personality trait on my part I guess, but it gets very very tiring and exhausting and sometimes my head just screams at me, 'for god's sake, get out of this madhouse and get some time just for me bymyself, alone, able to rest when I want, sleep when I want, not have to get up and get meals or food for the kids, do the washing, organise the kids lives, make lunches, blah blah blah....'. See now I'm having a whinge, sorry. As far as the old "On a scale of one to ten, what is the pain like? sessions, I hate them too, what a crock! I do LOVE reading all your posts though. Keep them coming!! They help more than a little, they help me a LOT in lots of ways.Hi TracieI am going to see if the mouth medication you mentioned is available here in OZ but I doubt it, I haven't ever heard of it here and my GP has never mentioned it either. Would be good for

me if it is though :)RoseWhat a beautiful inspiring story. I enjoyed reading it. I think your story writing idea is GREAT!! I guess sadly now that Aisha is away, I'm the only Aussie rep here!!Hi JudyI wish you a very happy birthday. Hope all your wishes come true and it's a happy and pain free one for you.Hi I absolutely adored your poem. I have written a copy of it in my special book I keep of poems or stories that are inspirational to me or reflect how I feel about things.Love and special healing thoughts and prayers to everyone,... ???)) -:|:- ,..? ..???)) ((,,..? ...? Toni -:|:- -:|:- ((,,..?*---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.735 / Virus Database: 489 - Release Date: 6/08/2004~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

August 20, 2004

Hi Rose

I'm sooo glad you had such a restful stay with your girlfriend, Marcia. I

too am in the process of getting off the prednisone. I have had a sore

mouth for a long time, burning, stinging all the same things you have.

When I wake up in the morning I have all this white gunk in the corners of

my mouth. The first episode of it I had was treated with thrush meds but

it never totally went away and it increases and decreases in severity all

the time. I take a bottle of water with me whenever I go out. Someone did

tell me that a mouthwash and gargle of pure alcohol would fix it but

haven't tried that one yet!! I will ask my GP about it next time I go.

But I don't have any answers as to what's causing it though, sorry. You

can't do everything, so take it easy and take your time. Don't wear

yourself out. It will still be there tomorrow and the next day and the

next ..... I think you've done pretty damn good so far. I have these

red sores coming up on my arms and hands. I mentioned it to my

immunologist yesterday, which was my first visit to him. And boy is that a

story and a half.

My first visit to the Immunologist: He more or less told me that my hair

loss, pain, unbalance, vision problems and everything else that I am

suffering is all in my head and he recommends that I go see a psychiatrist.

He said he doesn't believe I have any sort of life threatening illness and

I should get off the prednisone reducing it by 1mg every 2 weeks and get

out and exercise and I will feel better. The only way I will get over this

is to have a better attitude and fix myself. So I have totally, and I mean

totally, given up on these bloody friggin quacks. I thought that he might

have been able to help me but he didn't offer me blood tests, sputum tests

on this ever present nagging cough which a chest x-ray came up clear. He

also told me not to bother seeking out other physicians because they won't

find anything wrong with me either. So I feel totally alone with this

thing, and only my GP appears to be on my side. I feel like I have to just

wait now until some other symptom rears its ugly head like another seizure

or bells palsy episode before they will do ANY thing more in the way of

investigations. I've hit a brick wall and all these hospital doctors stick

together. Just by comments he made I know that they have all been talking

about me between themselves. So not sure what to do now. Really hanging

on to my purple bootstraps at the moment.

Happy birthday Nabella

Hope your special day was great and pain free for you.

Hi Judy

Sorry to hear about the ongoing saga with your knee. Hang in there and I

hope things improve quickly for you. Sending you healing thoughts and

prayers.

Quick question to the administrators of our wonderful family here, when I

get messages in the digest email that say [This message contained

attachments], how do I view them???????? I'd love to see the pictures or

photos that are attached to messages from time to time.

Hi Marla

I'm sorry to hear that you are in lots of pain at the moment. I hope it

eases up a little for you soon. I get those little red scaly sore spots

when I go in the sun too. I hate them and living in the Sunshine State of

Australia, doesn't help them at all Some of the dr's have said that

they are from the prednisone but I know that I only get these particular

ones when I go out in the sun or go anywhere during the day for that matter

as the sun is so strong and damaging here and the sunscreen makes them itch

and burn even more.

As Reneness mentioned, I find that meditation every day has helped a little

with pain and relaxation, I usually put my headphones at bedtime and just

play it all night. Usually after the first 15 mins I find myself being

relaxed enough to fall asleep but then its only an hour or two that these

little mini electric shocks jolt me back awake and I have to get out of bed

and wander out to the loungeroom to watch TV or fiddle around on my

computer, closing all the doors and keeping lights off so I don't wake

everyone else up too. My partner usually ends up waking up when he's aware

that I'm not in bed so that kind of makes me feel guilty, but I just CAN'T

stay in bed and lie there when I'm wide awake.

I am soooo very very sorry to hear about your sad loss and more so for you

friend Ginger. I will keep her, her family and you in my thoughts and

prayers. I hope that Ginger and her son can bond together and wrap each

other up in consolation and that all her friends can do so as well and help

each other through this most terrible time.

Hi Debbie

I haven't tried any sort of patches. I don't even know if they are

available here in OZ but I too have found that a combination of two pain

meds work better than just one. Don't know why, one of those mysteries of

life I guess

Dear Reneness

ALL THAT STRESS!!!! Life is just not fair sometimes. I have been saving

and saving for so long to get something for myself and had just finally got

the money, and the bloody window winding mechanism on my car broke today so

I had to go and get a quote to get it fixed and there goes my $200. I feel

so damn cheated all the time. If it isn't something that goes wrong that

needs fixing, its something for my kids or an unexpectedly high bill that

my kids have run up. It just isn't a very good period for me right now as

nothing seems to be going my way. I hope that changes real soon for the

better. I know what it's like to be always worrying about everyone else's

needs and well-being before my own, just a personality trait on my part I

guess, but it gets very very tiring and exhausting and sometimes my head

just screams at me, 'for god's sake, get out of this madhouse and get some

time just for me bymyself, alone, able to rest when I want, sleep when I

want, not have to get up and get meals or food for the kids, do the

washing, organise the kids lives, make lunches, blah blah blah....'. See

now I'm having a whinge, sorry. As far as the old " On a scale of one to

ten, what is the pain like? sessions, I hate them too, what a crock! I do

LOVE reading all your posts though. Keep them coming!! They help more

than a little, they help me a LOT in lots of ways.

Hi Tracie

I am going to see if the mouth medication you mentioned is available here

in OZ but I doubt it, I haven't ever heard of it here and my GP has never

mentioned it either. Would be good for me if it is though

Rose

What a beautiful inspiring story. I enjoyed reading it. I think your

story writing idea is GREAT!! I guess sadly now that Aisha is away, I'm

the only Aussie rep here!!

Hi Judy

I wish you a very happy birthday. Hope all your wishes come true and it's

a happy and pain free one for you.

Hi

I absolutely adored your poem. I have written a copy of it in my special

book I keep of poems or stories that are inspirational to me or reflect how

I feel about things.

Love and special healing thoughts and prayers to everyone,

.... ???)) -:|:-

,..? ..???))

((,,..? ...? Toni -:|:-

-:|:- ((,,..?*

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.735 / Virus Database: 489 - Release Date: 6/08/2004

August 20, 2004

Toni, I am so glad you liked the poem. I used to write alot of poetry when I was younger but raising kids kindof pushed that aside. I am glad you appreciated and 'got' it. It was fun to write. Sometimes...with being so sick I feel like Rapunzel stuck in the tower...except I don't have anyone looking out to save me. I so understand your impatience with doctors. I know I should be having rechecks more often but they don't really do me much good and the aggravation from the doctors is too much stress for me and my poor body to handle. Well, I'm back off to bed again cuz I didn't sleep too well. take it easy and I bet you could write something inspirational, too. hugs S.Toni wrote:

Hi RoseI'm sooo glad you had such a restful stay with your girlfriend, Marcia. I too am in the process of getting off the prednisone. I have had a sore mouth for a long time, burning, stinging all the same things you have. When I wake up in the morning I have all this white gunk in the corners of my mouth. The first episode of it I had was treated with thrush meds but it never totally went away and it increases and decreases in severity all the time. I take a bottle of water with me whenever I go out. Someone did tell me that a mouthwash and gargle of pure alcohol would fix it but haven't tried that one yet!! I will ask my GP about it next time I go. But I don't have any answers as to what's causing it though, sorry. You can't do everything, so take it easy and take your time. Don't wear

yourself out. It will still be there tomorrow and the next day and the next ..... I think you've done pretty damn good so far. I have these red sores coming up on my arms and hands. I mentioned it to my immunologist yesterday, which was my first visit to him. And boy is that a story and a half.My first visit to the Immunologist: He more or less told me that my hair loss, pain, unbalance, vision problems and everything else that I am suffering is all in my head and he recommends that I go see a psychiatrist. He said he doesn't believe I have any sort of life threatening illness and I should get off the prednisone reducing it by 1mg every 2 weeks and get out and exercise and I will feel better. The only way I will get over this is to have a better attitude and fix myself. So I have totally, and I mean totally, given up on these bloody friggin quacks. I thought that he might

have been able to help me but he didn't offer me blood tests, sputum tests on this ever present nagging cough which a chest x-ray came up clear. He also told me not to bother seeking out other physicians because they won't find anything wrong with me either. So I feel totally alone with this thing, and only my GP appears to be on my side. I feel like I have to just wait now until some other symptom rears its ugly head like another seizure or bells palsy episode before they will do ANY thing more in the way of investigations. I've hit a brick wall and all these hospital doctors stick together. Just by comments he made I know that they have all been talking about me between themselves. So not sure what to do now. Really hanging on to my purple bootstraps at the moment.Happy birthday NabellaHope your special day was great and pain free for you. :)Hi JudySorry to hear about the

ongoing saga with your knee. Hang in there and I hope things improve quickly for you. Sending you healing thoughts and prayers. :)Quick question to the administrators of our wonderful family here, when I get messages in the digest email that say [This message contained attachments], how do I view them???????? I'd love to see the pictures or photos that are attached to messages from time to time.Hi MarlaI'm sorry to hear that you are in lots of pain at the moment. I hope it eases up a little for you soon. I get those little red scaly sore spots when I go in the sun too. I hate them and living in the Sunshine State of Australia, doesn't help them at all Some of the dr's have said that they are from the prednisone but I know that I only get these particular ones when I go out in the sun or go anywhere during the day for that matter as the sun is so strong and damaging here

and the sunscreen makes them itch and burn even more.As Reneness mentioned, I find that meditation every day has helped a little with pain and relaxation, I usually put my headphones at bedtime and just play it all night. Usually after the first 15 mins I find myself being relaxed enough to fall asleep but then its only an hour or two that these little mini electric shocks jolt me back awake and I have to get out of bed and wander out to the loungeroom to watch TV or fiddle around on my computer, closing all the doors and keeping lights off so I don't wake everyone else up too. My partner usually ends up waking up when he's aware that I'm not in bed so that kind of makes me feel guilty, but I just CAN'T stay in bed and lie there when I'm wide awake.I am soooo very very sorry to hear about your sad loss and more so for you friend Ginger. I will keep her, her family and you in my thoughts and

prayers. I hope that Ginger and her son can bond together and wrap each other up in consolation and that all her friends can do so as well and help each other through this most terrible time.Hi DebbieI haven't tried any sort of patches. I don't even know if they are available here in OZ but I too have found that a combination of two pain meds work better than just one. Don't know why, one of those mysteries of life I guess :)Dear RenenessALL THAT STRESS!!!! Life is just not fair sometimes. I have been saving and saving for so long to get something for myself and had just finally got the money, and the bloody window winding mechanism on my car broke today so I had to go and get a quote to get it fixed and there goes my $200. I feel so damn cheated all the time. If it isn't something that goes wrong that needs fixing, its something for my kids or an unexpectedly high bill that

my kids have run up. It just isn't a very good period for me right now as nothing seems to be going my way. I hope that changes real soon for the better. I know what it's like to be always worrying about everyone else's needs and well-being before my own, just a personality trait on my part I guess, but it gets very very tiring and exhausting and sometimes my head just screams at me, 'for god's sake, get out of this madhouse and get some time just for me bymyself, alone, able to rest when I want, sleep when I want, not have to get up and get meals or food for the kids, do the washing, organise the kids lives, make lunches, blah blah blah....'. See now I'm having a whinge, sorry. As far as the old "On a scale of one to ten, what is the pain like? sessions, I hate them too, what a crock! I do LOVE reading all your posts though. Keep them coming!! They help more than a little, they help me

a LOT in lots of ways.Hi TracieI am going to see if the mouth medication you mentioned is available here in OZ but I doubt it, I haven't ever heard of it here and my GP has never mentioned it either. Would be good for me if it is though :)RoseWhat a beautiful inspiring story. I enjoyed reading it. I think your story writing idea is GREAT!! I guess sadly now that Aisha is away, I'm the only Aussie rep here!!Hi JudyI wish you a very happy birthday. Hope all your wishes come true and it's a happy and pain free one for you.Hi I absolutely adored your poem. I have written a copy of it in my special book I keep of poems or stories that are inspirational to me or reflect how I feel about things.Love and special healing thoughts and prayers to everyone,... ???)) -:|:- ,..? ..???))

((,,..? ...? Toni -:|:- -:|:- ((,,..?*---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.735 / Virus Database: 489 - Release Date: 6/08/2004~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

August 20, 2004