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Re: Digest Number 4638

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Dah, I think the problem was that I had not signed on so I hope my post goes through this time Anne

Re: [Neurosa

Re: Digest Number 4633

Saturday, September 20, 2008 4:45 AM

From:

"Anne Schmidt"

To:

"No Reply" <notify-dg-Neurosarcoidosis >

Hi this is Anne, I posted the e-mail about trigeminal neuraligia. it seems recently more information is available about TN recently the chicago tribune had an article and it described the symptoms (mine) exactly and the different treatments focusing on the gamma knife procedure I have asked my docs about it but with all my conditions it would not even be considered unless it were non-stop, I can't even imagine having that pain constantly I sure wouldn't need a gamma knife to correct the problem? Sorry for the negativity but I am currently in a rehab center to help with my weakness this is a latch resort to try something that might help me out of this lack of strength before I am bed-ridden. If I may vent because i am scared. Aside from the nsarc I have TN adrenal insufficiency with frequent bouts of adrenal crisis which is very serious I have to make to the hospital asap before I go into a coma, it was close twice and now my small village

emts are aware of this condition and know how to deal with me I call 911. I also have hypopituitarism, thyroid problems have had a stroke, hyponetrimia ( low sodium) fibromyalgia and now a rare infection called micobacterium chelonae a cousin of TB And to top it all off I am steroid dependent I had to get this out and certainly donot want to scare anyone but this is all due to the neuoscarc what a demon. So here i am at 4am at least in a private room in a nursing home trying to be positive but i cannot stop crying because I am so scared. I am not looking for sympathy but understanding from those who understand and are dealing with this demon also. Thanks for listening and all of you are in prayers. sarc friend Anne

From: Neurosarcoidosis <Neurosarcoidosis >Subject: Digest Number 4638To: Neurosarcoidosis Date: Saturday, September 20, 2008, 4:58 AM

A home of loving support for anyone living with neurosarcoidosis or wanting more information on this rare disease.

Messages In This Digest (5 Messages)

1a.

Re: thyroid From: mosaicgirl1

2a.

Re: pain question From: ashdownhill

2b.

Re: pain question From: tracie feldhaus

3a.

Re: dr appt From: Debbie

3b.

Re: dr appt From: tracie feldhaus

View All Topics | Create New Topic

Messages

1a.

Re: thyroid

Posted by: "mosaicgirl1" mosaicgirl1@... mosaicgirl1

Fri Sep 19, 2008 6:01 am (PDT)

Tracie,I have had the neuropsych tests which shows I cannot multi task, slowprocessing etc but since they can't find anything on MRI, it must bepsychosomatic. They really piss me off. Since my new rheumy is afemale, I am hoping when I speak with her next week that I can reach herin ways I have been unable to with the male docs (the only exception ismy urologist). If she could just understand I don't want thisdisability, that I want treatment to be able to function in my life. Ihave had some positive test results, but they are positive then negativethen positive again.Well, I appreciate your friendship and assistance and I will let youknow what happens.Terri G.>> Sarc can effect the thyroid as well as the parathyroid glands. Theparathyroids control calcium levels.> Why did they decide Cytoxan wasn't for you? I know you were doingwell on it. What about the other BRM's? Enbrel, Humira or Remicade--and now there is a new one-- don't know much about it. What aboutImuran or Arava or Plaquenil and Methotrexate? Have they given theseany

thought.> So the MRI showed arthritis-- they use these same drugs for that. Check out> www.ArthritisToday. org or and look up the drug guide. There is somuch wonderful info.> Here is an excellant article on sarcoidosis and the endocrine system,it includes all the glands that are controlled (including thyroid) andexplains alot of what is going on.> http://qjmed. oxfordjournals. org/cgi/content/ full/96/8/ 553 Print itout and take it with you to the Rheumi.> It sounds as if she wants to rerun all the tests and figure outexactly what is going on--- that's great if you have good insurance, butif you already have biopsy proven sarc-- it's not totally necessary.> I know she wants to make sure that nothing is "masking" what is goingon-- so she doesn't get any false positives (or negatives) behindwhatever autoimmune process is

going on. She'll want to exclude all theother possiblities before she treats with more than pred.> I wouldn't worry about the "it's all in your head" theory-- just lether know that you want her to help you get this puzzle figured out-- andthat you know that it's not in your head. If you are dealing with somedepression, it would be secondary to whatever is going on-- not the rootcause of what is going on.> Remember that you understand that with chronic pain, chronic illnessthat yes, depression can become an issue, and that you know that yourseratonin and norephnephrine hormones can get whacked out by the chronicpain and disruption of sleep cycles, etc-- but that "if you knew whatwas going on with your body, and had some relief via treatment-- andCytoxan was doing that; that you'd be alot more comfortable. With theprevious doc, he wanted to go to the depression issue and blow off thesarc

induced problems (arthritis) and you know that is not right." Don't back down-- work with her, talk to her, and let her know that youstudy on this disease--and you want her to be part of your healingteam-- not the competition. Get her on your side!> Hope this helps,> Tracie NS Co-owner/moderator>>>> thyroid>>>> Hey Guys,>> Is the thyroid suseptible to sarcoid. I am still having lots of> negative blood tests and MRI's but the vitamin D and thyroid are off.I> am starting up with this new rheumatologist and my first visit she> brought up the fact that one idiot thought it was in my head and also> said that I looked healthy as

a horse. Doesn't bode well for me does> it?>> I am trying not to get upset; I am seeing her next week. She doesn't> know that I know the MRI's just showed arthritis. Another doc let it> slip (they were not aware I had not received the results yet) during a> visit. She is going to let me have a prednisone IM injection but she> will discuss treatment with me next week.>> Please say a prayer for me that there will be some type of resolution.> I have accepted the fact that I will not be able to get Cytoxananymore> but there has got to be something out there for me. I had even> entertained the idea during the cytoxan treatment that I may be ableto> go back to work or to school. That is out now....>> Well, thanks for listening guys. I really appreciate it.>> Terri G.>

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~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.sarcbuddies.com/chat 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

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Anne,

I am so sorry that all of this crap you are going through. Please know

you are in my prayers for strength and hope and healing. Please feel

free to vent at anytime you want. We are here for you.

Terri G.

> >

> > Sarc can effect the thyroid as well as the parathyroid glands. The

> parathyroids control calcium levels.

> > Why did they decide Cytoxan wasn't for you? I know you were doing

> well on it. What about the other BRM's? Enbrel, Humira or Remicade--

> and now there is a new one-- don't know much about it. What about

> Imuran or Arava or Plaquenil and Methotrexate? Have they given these

> any thought.

> > So the MRI showed arthritis-- they use these same drugs for that.

> Check out

> > www.ArthritisToday. org or and look up the drug guide. There is so

> much wonderful info.

> > Here is an excellant article on sarcoidosis and the endocrine

system,

> it includes all the glands that are controlled (including thyroid) and

> explains alot of what is going on.

> > http://qjmed. oxfordjournals. org/cgi/content/ full/96/8/ 553 Print

it

> out and take it with you to the Rheumi.

> > It sounds as if she wants to rerun all the tests and figure out

> exactly what is going on--- that's great if you have good insurance,

but

> if you already have biopsy proven sarc-- it's not totally necessary.

> > I know she wants to make sure that nothing is " masking " what is

going

> on-- so she doesn't get any false positives (or negatives) behind

> whatever autoimmune process is going on. She'll want to exclude all

the

> other possiblities before she treats with more than pred.

> > I wouldn't worry about the " it's all in your head " theory-- just let

> her know that you want her to help you get this puzzle figured out--

and

> that you know that it's not in your head. If you are dealing with some

> depression, it would be secondary to whatever is going on-- not the

root

> cause of what is going on.

> > Remember that you understand that with chronic pain, chronic illness

> that yes, depression can become an issue, and that you know that your

> seratonin and norephnephrine hormones can get whacked out by the

chronic

> pain and disruption of sleep cycles, etc-- but that " if you knew what

> was going on with your body, and had some relief via treatment-- and

> Cytoxan was doing that; that you'd be alot more comfortable. With the

> previous doc, he wanted to go to the depression issue and blow off the

> sarc induced problems (arthritis) and you know that is not right. "

> Don't back down-- work with her, talk to her, and let her know that

you

> study on this disease--and you want her to be part of your healing

> team-- not the competition. Get her on your side!

> > Hope this helps,

> > Tracie NS Co-owner/moderator

> >

> >

> >

> > thyroid

> >

> >

> >

> > Hey Guys,

> >

> > Is the thyroid suseptible to sarcoid. I am still having lots of

> > negative blood tests and MRI's but the vitamin D and thyroid are

off.

> I

> > am starting up with this new rheumatologist and my first visit she

> > brought up the fact that one idiot thought it was in my head and

also

> > said that I looked healthy as a horse. Doesn't bode well for me does

> > it?

> >

> > I am trying not to get upset; I am seeing her next week. She doesn't

> > know that I know the MRI's just showed arthritis. Another doc let it

> > slip (they were not aware I had not received the results yet) during

a

> > visit. She is going to let me have a prednisone IM injection but she

> > will discuss treatment with me next week.

> >

> > Please say a prayer for me that there will be some type of

resolution.

> > I have accepted the fact that I will not be able to get Cytoxan

> anymore

> > but there has got to be something out there for me. I had even

> > entertained the idea during the cytoxan treatment that I may be able

> to

> > go back to work or to school. That is out now....

> >

> > Well, thanks for listening guys. I really appreciate it.

> >

> > Terri G.

> >

>

>

>

> Back to top Reply to sender | Reply to group | Reply via web post

> Messages in this topic (12)

>

>

> Visit Your Group

>

>

> Meditation and

> Lovingkindness

> A Yahoo! Group

> to share and learn.

>

> Yahoo! Health

> Early Detection

> Know the symptoms

> of breast cancer.

>

> Biz Resources

> Y! Small Business

> Articles, tools,

> forms, and more.

>

>

> Need to Reply?

> Click one of the " Reply " links to respond to a specific message in the

Daily Digest.

> Create New Topic | Visit Your Group on the Web

> Messages

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME

> CHATROOM LINK: http://www.sarcbuddies.com/chat

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

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Guest guest

HI Anne,

Sounds like you are having a veery rough time right now. Hang in there,

Tracie

thyroid> >> >> >> > Hey Guys,> >> > Is the thyroid suseptible to sarcoid. I am still having lots of> > negative blood tests and MRI's but the vitamin D and thyroid areoff.> I> > am starting up with this new rheumatologist and my first visit she> > brought up the fact that one idiot thought it was in my head andalso> > said that I looked healthy as a horse. Doesn't bode well for me does> > it?> >> > I am trying not to get upset; I am seeing her next week. She doesn't> > know that I know the MRI's just showed arthritis. Another doc let it> > slip (they were not aware I had not received the results yet) duringa> >

visit. She is going to let me have a prednisone IM injection but she> > will discuss treatment with me next week.> >> > Please say a prayer for me that there will be some type ofresolution.> > I have accepted the fact that I will not be able to get Cytoxan> anymore> > but there has got to be something out there for me. I had even> > entertained the idea during the cytoxan treatment that I may be able> to> > go back to work or to school. That is out now....> >> > Well, thanks for listening guys. I really appreciate it.> >> > Terri G.> >>>>> Back to top Reply to sender | Reply to group | Reply via web post> Messages in this topic (12)>>> Visit Your Group>>> Meditation and> Lovingkindness> A Yahoo! Group> to share and

learn.>> Yahoo! Health> Early Detection> Know the symptoms> of breast cancer.>> Biz Resources> Y! Small Business> Articles, tools,> forms, and more.>>> Need to Reply?> Click one of the "Reply" links to respond to a specific message in theDaily Digest.> Create New Topic | Visit Your Group on the Web> Messages> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME> CHATROOM LINK: http://www.sarcbudd ies.com/chat>> Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages>> Members Database:-> Listings of locations,

phone numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database>>

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Guest guest

>i want you and everyone else my prayers are with you all. i've had

NS for 11 yrs. i have good days & bad days.i'd rather have a few good

days than all bad. it sucks no one knows more about this condition,

but i feel blessed to know i'm not the only one w/this condition and

there are groups like this which help a lot. thank you from the

bottom of my heart.

>

>

>

>

>

>

>

> ,

>

>

> >

> >

> >

> >

> >

> >

> >

> > Re: Digest Number 4633

> > Saturday, September 20, 2008 4:45 AM

> >

> >

> >

> > From:

> >

> > " Anne Schmidt " annabanana60546@ ...

> >

> >

> >

> > To:

> > " No Reply " notify-dg-Neurosarc oidosis@yahoogro ups.com

> >

> >

> >

> >

> >

> >

> > Hi this is Anne, I posted the e-mail about trigeminal neuraligia.

it

> seems recently more information is available about TN recently the

> chicago tribune had an article and it described the symptoms (mine)

> exactly and the different treatments focusing on the gamma knife

> procedure I have asked my docs about it but with all my conditions

it

> would not even be considered unless it were non-stop, I can't even

> imagine having that pain constantly I sure wouldn't need a gamma

knife

> to correct the problem? Sorry for the negativity but I am currently

in a

> rehab center to help with my weakness this is a latch resort to try

> something that might help me out of this lack of strength before I

am

> bed-ridden. If I may vent because i am scared. Aside from the nsarc

I

> have TN adrenal insufficiency with frequent bouts of adrenal crisis

> which is very serious I have to make to the hospital asap before I

go

> into a coma, it was close twice and now my small village emts are

aware

> > of this condition and know how to deal with me I call 911. I also

have

> hypopituitarism, thyroid problems have had a stroke, hyponetrimia (

low

> sodium) fibromyalgia and now a rare infection called micobacterium

> chelonae a cousin of TB And to top it all off I am steroid

dependent I

> had to get this out and certainly donot want to scare anyone but

this is

> all due to the neuoscarc what a demon. So here i am at 4am at least

in a

> private room in a nursing home trying to be positive but i cannot

stop

> crying because I am so scared. I am not looking for sympathy but

> understanding from those who understand and are dealing with this

demon

> also. Thanks for listening and all of you are in prayers. sarc

friend

> Anne

> >

> >

> >

> > From: Neurosarcoidosis@ yahoogroups. com

> Neurosarcoidosis@ yahoogroups. com

> > Subject: Digest Number 4638

> > To: Neurosarcoidosis@ yahoogroups. com

> > Date: Saturday, September 20, 2008, 4:58 AM

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > A home of loving support for anyone living with neurosarcoidosis

or

> wanting more information on this rare disease.

> >

> > Messages In This Digest (5 Messages)

> >

> >

> > 1a.

> > Re: thyroid From: mosaicgirl1

> >

> > 2a.

> > Re: pain question From: ashdownhill

> > 2b.

> > Re: pain question From: tracie feldhaus

> >

> > 3a.

> > Re: dr appt From: Debbie

> > 3b.

> > Re: dr appt From: tracie feldhaus

> > View All Topics | Create New Topic

> > Messages

> >

> >

> > 1a.

> >

> > Re: thyroid

> > Posted by: " mosaicgirl1 " mosaicgirl1@ ... mosaicgirl1

> > Fri Sep 19, 2008 6:01 am (PDT)

> >

> > Tracie,

> >

> > I have had the neuropsych tests which shows I cannot multi task,

slow

> > processing etc but since they can't find anything on MRI, it must

be

> > psychosomatic. They really piss me off. Since my new rheumy is a

> > female, I am hoping when I speak with her next week that I can

reach

> her

> > in ways I have been unable to with the male docs (the only

exception

> is

> > my urologist). If she could just understand I don't want this

> > disability, that I want treatment to be able to function in my

life. I

> > have had some positive test results, but they are positive then

> negative

> > then positive again.

> >

> > Well, I appreciate your friendship and assistance and I will let

you

> > know what happens.

> >

> > Terri G.

> >

> > >

> > > Sarc can effect the thyroid as well as the parathyroid glands.

The

> > parathyroids control calcium levels.

> > > Why did they decide Cytoxan wasn't for you? I know you were

doing

> > well on it. What about the other BRM's? Enbrel, Humira or

Remicade--

> > and now there is a new one-- don't know much about it. What about

> > Imuran or Arava or Plaquenil and Methotrexate? Have they given

these

> > any thought.

> > > So the MRI showed arthritis-- they use these same drugs for

that.

> > Check out

> > > www.ArthritisToday. org or and look up the drug guide. There is

so

> > much wonderful info.

> > > Here is an excellant article on sarcoidosis and the endocrine

> system,

> > it includes all the glands that are controlled (including

thyroid) and

> > explains alot of what is going on.

> > > http://qjmed. oxfordjournals. org/cgi/content/ full/96/8/ 553

Print

> it

> > out and take it with you to the Rheumi.

> > > It sounds as if she wants to rerun all the tests and figure out

> > exactly what is going on--- that's great if you have good

insurance,

> but

> > if you already have biopsy proven sarc-- it's not totally

necessary.

> > > I know she wants to make sure that nothing is " masking " what is

> going

> > on-- so she doesn't get any false positives (or negatives) behind

> > whatever autoimmune process is going on. She'll want to exclude

all

> the

> > other possiblities before she treats with more than pred.

> > > I wouldn't worry about the " it's all in your head " theory--

just let

> > her know that you want her to help you get this puzzle figured

out--

> and

> > that you know that it's not in your head. If you are dealing with

some

> > depression, it would be secondary to whatever is going on-- not

the

> root

> > cause of what is going on.

> > > Remember that you understand that with chronic pain, chronic

illness

> > that yes, depression can become an issue, and that you know that

your

> > seratonin and norephnephrine hormones can get whacked out by the

> chronic

> > pain and disruption of sleep cycles, etc-- but that " if you knew

what

> > was going on with your body, and had some relief via treatment--

and

> > Cytoxan was doing that; that you'd be alot more comfortable. With

the

> > previous doc, he wanted to go to the depression issue and blow

off the

> > sarc induced problems (arthritis) and you know that is not right. "

> > Don't back down-- work with her, talk to her, and let her know

that

> you

> > study on this disease--and you want her to be part of your healing

> > team-- not the competition. Get her on your side!

> > > Hope this helps,

> > > Tracie NS Co-owner/moderator

> > >

> > >

> > >

> > > thyroid

> > >

> > >

> > >

> > > Hey Guys,

> > >

> > > Is the thyroid suseptible to sarcoid. I am still having lots of

> > > negative blood tests and MRI's but the vitamin D and thyroid are

> off.

> > I

> > > am starting up with this new rheumatologist and my first visit

she

> > > brought up the fact that one idiot thought it was in my head and

> also

> > > said that I looked healthy as a horse. Doesn't bode well for me

does

> > > it?

> > >

> > > I am trying not to get upset; I am seeing her next week. She

doesn't

> > > know that I know the MRI's just showed arthritis. Another doc

let it

> > > slip (they were not aware I had not received the results yet)

during

> a

> > > visit. She is going to let me have a prednisone IM injection

but she

> > > will discuss treatment with me next week.

> > >

> > > Please say a prayer for me that there will be some type of

> resolution.

> > > I have accepted the fact that I will not be able to get Cytoxan

> > anymore

> > > but there has got to be something out there for me. I had even

> > > entertained the idea during the cytoxan treatment that I may be

able

> > to

> > > go back to work or to school. That is out now....

> > >

> > > Well, thanks for listening guys. I really appreciate it.

> > >

> > > Terri G.

> > >

> >

> >

> >

> > Back to top Reply to sender | Reply to group | Reply via web post

> > Messages in this topic (12)

> >

> >

> > Visit Your Group

> >

> >

> > Meditation and

> > Lovingkindness

> > A Yahoo! Group

> > to share and learn.

> >

> > Yahoo! Health

> > Early Detection

> > Know the symptoms

> > of breast cancer.

> >

> > Biz Resources

> > Y! Small Business

> > Articles, tools,

> > forms, and more.

> >

> >

> > Need to Reply?

> > Click one of the " Reply " links to respond to a specific message

in the

> Daily Digest.

> > Create New Topic | Visit Your Group on the Web

> > Messages

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> > NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME

> > CHATROOM LINK: http://www.sarcbudd ies.com/chat

> >

> > Message Archives:-

> > http://groups. yahoo.com/ group/Neurosarco idosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups. yahoo.com/ group/Neurosarco idosis/database

> >

> >

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