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Thanks for the note. I did look up the link you sent. None of the

doctors I have seen have ever mentioned that Guillen Barre you found.

I know that my ANA has been checked several times throughout all of

this because when these sypmtoms started in August they thought I had

Lupus, forgot to mention that all my hair fell out as well. So that

prompted them towards Lupus, but said I shouldnt have it if my ANA are

ok. He ordered chest xray and blood work this time when he mentioned

neurosarcoidosis...what is it they will find in my xray or blood if it

is?

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Thanks for the note. I did look up the link you sent. None of the

doctors I have seen have ever mentioned that Guillen Barre you found.

I know that my ANA has been checked several times throughout all of

this because when these sypmtoms started in August they thought I had

Lupus, forgot to mention that all my hair fell out as well. So that

prompted them towards Lupus, but said I shouldnt have it if my ANA are

ok. He ordered chest xray and blood work this time when he mentioned

neurosarcoidosis...what is it they will find in my xray or blood if it

is?

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Tammy, if you have sarcoidosis, generally it shows in

the lungs in 85% of all that get it. Your lungs would

have a " ground glass " appearance. Instead of being

clear black, they'd have alot of white (like looking

thru glass that has been ground, but not polished).

The blood work was probably for elevated ACE levels

(angiotension converting enzymes) but all that says is

you have some form of systemic inflammation.

Sarc does not have any specific blood test that says

yep, it's sarc. It is truly a diagnosis of ruling out

all the other auto-immune diseases ad going from

there. If your lungs look icky-- then they may do a

bronchoscopy and that would give them tissue to look

at determine if it is sarcoidosis. It really is the

easiest way to find sarcoidosis-- and the least

intrusive.

It sounds like you've got a good doc that is going to

figure out what is going on-- and this is wonderful!

Blessings to you,

Tracie

NS Co-owner/moderator

--- Tammy wrote:

> Thanks for the note. I did look up the link you

> sent. None of the

> doctors I have seen have ever mentioned that Guillen

> Barre you found.

> I know that my ANA has been checked several times

> throughout all of

> this because when these sypmtoms started in August

> they thought I had

> Lupus, forgot to mention that all my hair fell out

> as well. So that

> prompted them towards Lupus, but said I shouldnt

> have it if my ANA are

> ok. He ordered chest xray and blood work this time

> when he mentioned

> neurosarcoidosis...what is it they will find in my

> xray or blood if it

> is?

>

>

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Tammy, if you have sarcoidosis, generally it shows in

the lungs in 85% of all that get it. Your lungs would

have a " ground glass " appearance. Instead of being

clear black, they'd have alot of white (like looking

thru glass that has been ground, but not polished).

The blood work was probably for elevated ACE levels

(angiotension converting enzymes) but all that says is

you have some form of systemic inflammation.

Sarc does not have any specific blood test that says

yep, it's sarc. It is truly a diagnosis of ruling out

all the other auto-immune diseases ad going from

there. If your lungs look icky-- then they may do a

bronchoscopy and that would give them tissue to look

at determine if it is sarcoidosis. It really is the

easiest way to find sarcoidosis-- and the least

intrusive.

It sounds like you've got a good doc that is going to

figure out what is going on-- and this is wonderful!

Blessings to you,

Tracie

NS Co-owner/moderator

--- Tammy wrote:

> Thanks for the note. I did look up the link you

> sent. None of the

> doctors I have seen have ever mentioned that Guillen

> Barre you found.

> I know that my ANA has been checked several times

> throughout all of

> this because when these sypmtoms started in August

> they thought I had

> Lupus, forgot to mention that all my hair fell out

> as well. So that

> prompted them towards Lupus, but said I shouldnt

> have it if my ANA are

> ok. He ordered chest xray and blood work this time

> when he mentioned

> neurosarcoidosis...what is it they will find in my

> xray or blood if it

> is?

>

>

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Did your hair grow back??? Cause my sister Diane, is going through the same thing right now and the docs are trying to figure out just what she has. Her hair is falling out and she's so depressed about it. She's a beautiful, and I do mean beautiful woman and it's so hard for her to go to work everyday like that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, fatigue, weight loss. Her husband thinks she's making a mountain out of a molehill. BonnieBCreate a Home Theater Like the Pros. Watch the video on AOL Home.

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Did your hair grow back??? Cause my sister Diane, is going through the same thing right now and the docs are trying to figure out just what she has. Her hair is falling out and she's so depressed about it. She's a beautiful, and I do mean beautiful woman and it's so hard for her to go to work everyday like that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, fatigue, weight loss. Her husband thinks she's making a mountain out of a molehill. BonnieBCreate a Home Theater Like the Pros. Watch the video on AOL Home.

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My hair is growing back in slowly...but not completely. Where it

fell out in clumps, it is still a little sparse. I had to wear a wig

from about October on. Now it just looks like I have a really,

really short hairdo with hair that is thinning in spots! And to

think when that symptom appeared I thought it was devastating. To

only have that one back, and not the severe headaches, sore painful ,

weak muscles, dizziness, unsteady walk! I go to the doctor in one

week...hopefully with answers from my lab work and chest x ray. I

was just talking to my husband, telling him how I feel like giving

up...I mean, how long is a person supposed to be in pain everyday

with no medication to at least try to help. My lifestyle is so

different from how it used to be, and somedays I am in so much pain I

just wonder why 7 months have gone by with no answers, no one giving

me any hope, any pain relief. Some days my head hurts so bad I

wonder if I will make it to the next day. Or somedays I can't get up

out of a chair because my legs wont work...How long before some

doctor tells me he can give me some medicine to help me. Please,

everyone, pray for me that I get some results next Thursday at the

doctor and he will know what is wrong and put me on some medicine.

It is hard enough to have a huge lifestyle change, but not even

knowing why makes it hard to accept the change. Sorry for going on

and on, just dont feel like I have anyone who understands...my

husband tries but cant quite get it like someone who lives everyday

in pain. Thank you to all who have read what I have to write and who

have written to me...especially since I havent even gotten a

diagnosis yet, just that neurosarc is a possibility, yet you all have

welcomed me. Thank you

Tammy

-- In Neurosarcoidosis , quiltenbe@... wrote:

>

> Did your hair grow back??? Cause my sister Diane, is going through

the same

> thing right now and the docs are trying to figure out just what she

has. Her

> hair is falling out and she's so depressed about it. She's a

beautiful, and I

> do mean beautiful woman and it's so hard for her to go to work

everyday like

> that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc

told her that

> our genes are awful. Her other symptoms are extremely dry eyes,

mouth sores,

> fatigue, weight loss. Her husband thinks she's making a mountain

out of a

> molehill. BonnieB

>

>

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

> (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?

ncid=aolhom00030000000001)

>

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My hair is growing back in slowly...but not completely. Where it

fell out in clumps, it is still a little sparse. I had to wear a wig

from about October on. Now it just looks like I have a really,

really short hairdo with hair that is thinning in spots! And to

think when that symptom appeared I thought it was devastating. To

only have that one back, and not the severe headaches, sore painful ,

weak muscles, dizziness, unsteady walk! I go to the doctor in one

week...hopefully with answers from my lab work and chest x ray. I

was just talking to my husband, telling him how I feel like giving

up...I mean, how long is a person supposed to be in pain everyday

with no medication to at least try to help. My lifestyle is so

different from how it used to be, and somedays I am in so much pain I

just wonder why 7 months have gone by with no answers, no one giving

me any hope, any pain relief. Some days my head hurts so bad I

wonder if I will make it to the next day. Or somedays I can't get up

out of a chair because my legs wont work...How long before some

doctor tells me he can give me some medicine to help me. Please,

everyone, pray for me that I get some results next Thursday at the

doctor and he will know what is wrong and put me on some medicine.

It is hard enough to have a huge lifestyle change, but not even

knowing why makes it hard to accept the change. Sorry for going on

and on, just dont feel like I have anyone who understands...my

husband tries but cant quite get it like someone who lives everyday

in pain. Thank you to all who have read what I have to write and who

have written to me...especially since I havent even gotten a

diagnosis yet, just that neurosarc is a possibility, yet you all have

welcomed me. Thank you

Tammy

-- In Neurosarcoidosis , quiltenbe@... wrote:

>

> Did your hair grow back??? Cause my sister Diane, is going through

the same

> thing right now and the docs are trying to figure out just what she

has. Her

> hair is falling out and she's so depressed about it. She's a

beautiful, and I

> do mean beautiful woman and it's so hard for her to go to work

everyday like

> that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc

told her that

> our genes are awful. Her other symptoms are extremely dry eyes,

mouth sores,

> fatigue, weight loss. Her husband thinks she's making a mountain

out of a

> molehill. BonnieB

>

>

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

> (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?

ncid=aolhom00030000000001)

>

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Tammie, I know how you feel, and many of us do, about 5 years ago I was feeling much like you feel now, driving and hour one way to do many tests but no treatment, and in the end the " specialist " sill not sure if It's neurosarc or not, even though I had a biopsy that proved Sarcoidosis. I just called my local doctor who had me go to the specialist and told him I could not take it anymore, and we got into see him the next day and he started me on Methotrexate, which has proven to be helpful up until recently when the pain etc, returned, now I am waiting again only this time it is on the Insurance company to OK a medication that would help me, my doctor was able to get on top of the pain right away this time, but the legs are getting weaker and weaker and fear they may just stop, at times they do. I tell you this so you know you are not alone, It just doesn't seem right to have to suffer in pain, but we do, and some days are better then others. I will keep you in my prayers that relief is in sight. Marl a

My hair is growing back in slowly...but not completely. Where it

fell out in clumps, it is still a little sparse. I had to wear a wig

from about October on. Now it just looks like I have a really,

really short hairdo with hair that is thinning in spots! And to

think when that symptom appeared I thought it was devastating. To

only have that one back, and not the severe headaches, sore painful ,

weak muscles, dizziness, unsteady walk! I go to the doctor in one

week...hopefully with answers from my lab work and chest x ray. I

was just talking to my husband, telling him how I feel like giving

up...I mean, how long is a person supposed to be in pain everyday

with no medication to at least try to help. My lifestyle is so

different from how it used to be, and somedays I am in so much pain I

just wonder why 7 months have gone by with no answers, no one giving

me any hope, any pain relief. Some days my head hurts so bad I

wonder if I will make it to the next day. Or somedays I can't get up

out of a chair because my legs wont work...How long before some

doctor tells me he can give me some medicine to help me. Please,

everyone, pray for me that I get some results next Thursday at the

doctor and he will know what is wrong and put me on some medicine.

It is hard enough to have a huge lifestyle change, but not even

knowing why makes it hard to accept the change. Sorry for going on

and on, just dont feel like I have anyone who understands...my

husband tries but cant quite get it like someone who lives everyday

in pain. Thank you to all who have read what I have to write and who

have written to me...especially since I havent even gotten a

diagnosis yet, just that neurosarc is a possibility, yet you all have

welcomed me. Thank you

Tammy

-- In Neurosarcoidosis , quiltenbe@... wrote:

>

> Did your hair grow back??? Cause my sister Diane, is going through

the same

> thing right now and the docs are trying to figure out just what she

has. Her

> hair is falling out and she's so depressed about it. She's a

beautiful, and I

> do mean beautiful woman and it's so hard for her to go to work

everyday like

> that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc

told her that

> our genes are awful. Her other symptoms are extremely dry eyes,

mouth sores,

> fatigue, weight loss. Her husband thinks she's making a mountain

out of a

> molehill. BonnieB

>

>

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

> (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?

ncid=aolhom00030000000001)

>

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

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Tammie, I know how you feel, and many of us do, about 5 years ago I was feeling much like you feel now, driving and hour one way to do many tests but no treatment, and in the end the " specialist " sill not sure if It's neurosarc or not, even though I had a biopsy that proved Sarcoidosis. I just called my local doctor who had me go to the specialist and told him I could not take it anymore, and we got into see him the next day and he started me on Methotrexate, which has proven to be helpful up until recently when the pain etc, returned, now I am waiting again only this time it is on the Insurance company to OK a medication that would help me, my doctor was able to get on top of the pain right away this time, but the legs are getting weaker and weaker and fear they may just stop, at times they do. I tell you this so you know you are not alone, It just doesn't seem right to have to suffer in pain, but we do, and some days are better then others. I will keep you in my prayers that relief is in sight. Marl a

My hair is growing back in slowly...but not completely. Where it

fell out in clumps, it is still a little sparse. I had to wear a wig

from about October on. Now it just looks like I have a really,

really short hairdo with hair that is thinning in spots! And to

think when that symptom appeared I thought it was devastating. To

only have that one back, and not the severe headaches, sore painful ,

weak muscles, dizziness, unsteady walk! I go to the doctor in one

week...hopefully with answers from my lab work and chest x ray. I

was just talking to my husband, telling him how I feel like giving

up...I mean, how long is a person supposed to be in pain everyday

with no medication to at least try to help. My lifestyle is so

different from how it used to be, and somedays I am in so much pain I

just wonder why 7 months have gone by with no answers, no one giving

me any hope, any pain relief. Some days my head hurts so bad I

wonder if I will make it to the next day. Or somedays I can't get up

out of a chair because my legs wont work...How long before some

doctor tells me he can give me some medicine to help me. Please,

everyone, pray for me that I get some results next Thursday at the

doctor and he will know what is wrong and put me on some medicine.

It is hard enough to have a huge lifestyle change, but not even

knowing why makes it hard to accept the change. Sorry for going on

and on, just dont feel like I have anyone who understands...my

husband tries but cant quite get it like someone who lives everyday

in pain. Thank you to all who have read what I have to write and who

have written to me...especially since I havent even gotten a

diagnosis yet, just that neurosarc is a possibility, yet you all have

welcomed me. Thank you

Tammy

-- In Neurosarcoidosis , quiltenbe@... wrote:

>

> Did your hair grow back??? Cause my sister Diane, is going through

the same

> thing right now and the docs are trying to figure out just what she

has. Her

> hair is falling out and she's so depressed about it. She's a

beautiful, and I

> do mean beautiful woman and it's so hard for her to go to work

everyday like

> that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc

told her that

> our genes are awful. Her other symptoms are extremely dry eyes,

mouth sores,

> fatigue, weight loss. Her husband thinks she's making a mountain

out of a

> molehill. BonnieB

>

>

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

> (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?

ncid=aolhom00030000000001)

>

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

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Hi Tammy, Please don't say sorry for going on and on. This is a safe place where you can go on and on and on and on. We all do. You are not alone. We are all in this together. Even if your diagnosis isn't neurosarcoidosis. I know how frustrating it is not to have a diagnosis. The first neurologist I saw had no idea what was wrong and sent me to one at a research hospital. One of the first questions the second neurologists nurse asked me was "was your diagnosis made in the same year that your symptoms started?" I told her I didn't have a diagnosis and I thought that was a crazy question. I have come to find out now (a year later) that it wasn't a crazy question. Pinning down the diagnosis takes a long time sometimes. The third neurologist I saw is the one that said it's neurosarcoidosis. I say all that to encourage you to hang in there. Don't get discouraged. Keep pressing in. Someone will figure it out and help you. I will be praying that it will be

figured out quickly and that you get relief soon. You are going through so much right now. We are here for you! Please hang in there and remember that you aren't alone! FYI- Plaquenil helped decrease my pain a lot. My neuologist tried it because he said he had a patient before that had severe headaches and it took them away. It works well for me too. Everyone's different, but just thought that might be a nugget of info to keep in the back of your head for future refrence. You are in my prayers! CathyTammy wrote: My hair is growing back in slowly...but not completely. Where it fell out in clumps, it is still a little sparse. I had to wear a wig from about October on. Now it just looks like I have a really, really short hairdo with hair that is thinning in spots! And to think when that symptom appeared I thought it was devastating. To only have that one back, and not the severe headaches, sore painful , weak muscles, dizziness, unsteady walk! I go to the doctor in one week...hopefully with answers from my lab work and chest x ray. I was just talking to my husband, telling him how I feel like giving up...I mean, how long is a person supposed to be in pain everyday with no medication to at least try to help. My lifestyle is so different from how it used to be, and somedays I am in so much pain I just wonder why 7 months have gone by with no answers, no one giving me any

hope, any pain relief. Some days my head hurts so bad I wonder if I will make it to the next day. Or somedays I can't get up out of a chair because my legs wont work...How long before some doctor tells me he can give me some medicine to help me. Please, everyone, pray for me that I get some results next Thursday at the doctor and he will know what is wrong and put me on some medicine. It is hard enough to have a huge lifestyle change, but not even knowing why makes it hard to accept the change. Sorry for going on and on, just dont feel like I have anyone who understands...my husband tries but cant quite get it like someone who lives everyday in pain. Thank you to all who have read what I have to write and who have written to me...especially since I havent even gotten a diagnosis yet, just that neurosarc is a possibility, yet you all have welcomed me. Thank youTammy -- In Neurosarcoidosis , quiltenbe@... wrote:>> Did your hair grow back??? Cause my sister Diane, is going through the same > thing right now and the docs are trying to figure out just what she has. Her > hair is falling out and she's so depressed about it. She's a beautiful, and I > do mean beautiful woman and it's so hard for her to go to work everyday like > that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that > our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, > fatigue, weight loss. Her husband thinks she's making a mountain out of a > molehill. BonnieB> > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)>

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Hi Tammy, Please don't say sorry for going on and on. This is a safe place where you can go on and on and on and on. We all do. You are not alone. We are all in this together. Even if your diagnosis isn't neurosarcoidosis. I know how frustrating it is not to have a diagnosis. The first neurologist I saw had no idea what was wrong and sent me to one at a research hospital. One of the first questions the second neurologists nurse asked me was "was your diagnosis made in the same year that your symptoms started?" I told her I didn't have a diagnosis and I thought that was a crazy question. I have come to find out now (a year later) that it wasn't a crazy question. Pinning down the diagnosis takes a long time sometimes. The third neurologist I saw is the one that said it's neurosarcoidosis. I say all that to encourage you to hang in there. Don't get discouraged. Keep pressing in. Someone will figure it out and help you. I will be praying that it will be

figured out quickly and that you get relief soon. You are going through so much right now. We are here for you! Please hang in there and remember that you aren't alone! FYI- Plaquenil helped decrease my pain a lot. My neuologist tried it because he said he had a patient before that had severe headaches and it took them away. It works well for me too. Everyone's different, but just thought that might be a nugget of info to keep in the back of your head for future refrence. You are in my prayers! CathyTammy wrote: My hair is growing back in slowly...but not completely. Where it fell out in clumps, it is still a little sparse. I had to wear a wig from about October on. Now it just looks like I have a really, really short hairdo with hair that is thinning in spots! And to think when that symptom appeared I thought it was devastating. To only have that one back, and not the severe headaches, sore painful , weak muscles, dizziness, unsteady walk! I go to the doctor in one week...hopefully with answers from my lab work and chest x ray. I was just talking to my husband, telling him how I feel like giving up...I mean, how long is a person supposed to be in pain everyday with no medication to at least try to help. My lifestyle is so different from how it used to be, and somedays I am in so much pain I just wonder why 7 months have gone by with no answers, no one giving me any

hope, any pain relief. Some days my head hurts so bad I wonder if I will make it to the next day. Or somedays I can't get up out of a chair because my legs wont work...How long before some doctor tells me he can give me some medicine to help me. Please, everyone, pray for me that I get some results next Thursday at the doctor and he will know what is wrong and put me on some medicine. It is hard enough to have a huge lifestyle change, but not even knowing why makes it hard to accept the change. Sorry for going on and on, just dont feel like I have anyone who understands...my husband tries but cant quite get it like someone who lives everyday in pain. Thank you to all who have read what I have to write and who have written to me...especially since I havent even gotten a diagnosis yet, just that neurosarc is a possibility, yet you all have welcomed me. Thank youTammy -- In Neurosarcoidosis , quiltenbe@... wrote:>> Did your hair grow back??? Cause my sister Diane, is going through the same > thing right now and the docs are trying to figure out just what she has. Her > hair is falling out and she's so depressed about it. She's a beautiful, and I > do mean beautiful woman and it's so hard for her to go to work everyday like > that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that > our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, > fatigue, weight loss. Her husband thinks she's making a mountain out of a > molehill. BonnieB> > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)>

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