Re: Sjorgrens

[Guest guest]

a friend suggested maybe I don't have neurosarcoidosis at all....but Sojorgren's syndrome instead....any comments

You can have both. Don't you have a positive biopsy for sarc tho?

Sjorgens is a condition that attacks the glands that produce tears and salivary glands, as well as the sweat glands. If you do have a positive biopsy for sarc-- this friend is in the same place of ignorance that most of our MD's are in. They too go for the easy dx, and we end up in trouble because they aren't treating the problem.

If you are having problems with dry mouth, sinuses, eyes-- it's the artificial tears and gels for the eyes, Biotene toothpaste, mouthwash, gum and gel for the salivary glands-- and Sinus Rinse for the sinuses, along with Ocean Nasal spray during the day for the sinuses.

All are totally natural, and work so very, very well.

Take care,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi again, I had a positive biopsy for sarc as a young child from what my parents told me and I was operated on for tumors in my neck and head. I developed all the symptoms of neruosarc by the age of 2 and a half. diabetis insipidis, bells palsy, loss of hearing, white blood cells were amuck, grey membranes, etc. I was treated for these things....but today doctors say there are no records or proof I have or had sarc. Off and on over my life I have had bouts of symptoms returning only to disappear (except the hearing loss of course) Now that I am 60 my symptoms have been totally in control for over one year. But only by self report and so far doctors have not found it in any of the standard tests (chest e-ray, blood work, physical checkup) and since it is not showing I don't have it according to them. So I just don't know what to believe. My sis has it in the lungs, eyes, and hilars, so it was easier to label. I have a new doctor

but if the specialist has labelled me depressed I am not sure he is going to listen to me now. I know if I could just get a head scan of some sort; it would show the old and new sarc that dances around in here making my life miserable. But you are right the friend may not understand about sarc anyway. Is there a way to get a doctor to stand up and listen????? My Sis says I should just stop trying to be so healthy and quit my herbals, ways of eating, and let the sarc take it's course; then go to the doctor so they could see it better. I just can't give up the good fight yet. I am not winning or losing at this point. Thanks for letting me vent anyway and keep on with the good work you do. Claretiodaat@... wrote: In a message dated 5/21/07 11:25:25 AM Pacific Daylight Time, cweeman (AT) yahoo (DOT) com writes: a friend suggested maybe I don't have neurosarcoidosis at all....but Sojorgren's syndrome instead....any commentsYou

can have both. Don't you have a positive biopsy for sarc tho? Sjorgens is a condition that attacks the glands that produce tears and salivary glands, as well as the sweat glands. If you do have a positive biopsy for sarc-- this friend is in the same place of ignorance that most of our MD's are in. They too go for the easy dx, and we end up in trouble because they aren't treating the problem.If you are having problems with dry mouth, sinuses, eyes-- it's the artificial tears and gels for the eyes, Biotene toothpaste, mouthwash, gum and gel for the salivary glands-- and Sinus Rinse for the sinuses, along with Ocean Nasal spray during the day for the sinuses. All are totally natural, and work so very, very well. Take care,TracieNS Co-owner/moderator**************************************See what's free at http://www.aol.com.

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[Guest guest]

Clare, have you or your parents tried to get those records from your childhood? I know it's been a long time, but many hospitals & doctors keep medical records forever, usually on microfilm. It may take awhile for them to be retrieved, but I'd give it a try. If the hospital medical records dept. or doctor's office (if the doctor has died, his records should have gone to another practice or to a hospital) doesn't have anything, try the pathology department at the hospital. I have obtained records from about 40 years prior.

The hearing loss & Bell's palsy are signs of cranial nerve damage & sarc loves the cranial nerves. Dr. Baughman in Cincy told me that cranial nerve lesions are very difficult to find on MRI.

Re: the Sjogren's, that's been raised as a possibility for me also, but I didn't really want a biopsy since there's no specific treatment for it anyway. Just another diagnosis to add to a list that's already too long. As Tracie said, just treat the symptoms. One interesting thing about Sjogren's though is that about 50% (I think that's the number) have decreased creatinine clearance, indicating kidney disease. I do have stage 3 kidney disease, with no apparent cause, so I have to wonder if there is a connection there.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: SjorgrensDate: Mon, 21 May 2007 17:52:52 -0700 (PDT)

Hi again,

I had a positive biopsy for sarc as a young child from what my parents told me and I was operated on for tumors in my neck and head. I developed all the symptoms of neruosarc by the age of 2 and a half. diabetis insipidis, bells palsy, loss of hearing, white blood cells were amuck, grey membranes, etc. I was treated for these things....but today doctors say there are no records or proof I have or had sarc. Off and on over my life I have had bouts of symptoms returning only to disappear (except the hearing loss of course) Now that I am 60 my symptoms have been totally in control for over one year. But only by self report and so far doctors have not found it in any of the standard tests (chest e-ray, blood work, physical checkup) and since it is not showing I don't have it according to them. So I just don't know what to believe. My sis has it in the lungs, eyes, and hilars, so it was easier to label. I have a new doctor but if the specialist has labelled me depressed I am not sure he is going to listen to me now. I know if I could just get a head scan of some sort; it would show the old and new sarc that dances around in here making my life miserable. But you are right the friend may not understand about sarc anyway. Is there a way to get a doctor to stand up and listen?????

My Sis says I should just stop trying to be so healthy and quit my herbals, ways of eating, and let the sarc take it's course; then go to the doctor so they could see it better. I just can't give up the good fight yet. I am not winning or losing at this point.

Thanks for letting me vent anyway and keep on with the good work you do.

Claretiodaat (AT) aol (DOT) com wrote:

In a message dated 5/21/07 11:25:25 AM Pacific Daylight Time, cweeman (AT) yahoo (DOT) com writes:

a friend suggested maybe I don't have neurosarcoidosis at all....but Sojorgren's syndrome instead....any commentsYou can have both. Don't you have a positive biopsy for sarc tho? Sjorgens is a condition that attacks the glands that produce tears and salivary glands, as well as the sweat glands. If you do have a positive biopsy for sarc-- this friend is in the same place of ignorance that most of our MD's are in. They too go for the easy dx, and we end up in trouble because they aren't treating the problem.If you are having problems with dry mouth, sinuses, eyes-- it's the artificial tears and gels for the eyes, Biotene toothpaste, mouthwash, gum and gel for the salivary glands-- and Sinus Rinse for the sinuses, along with Ocean Nasal spray during the day for the sinuses. All are totally natural, and work so very, very well. Take care,TracieNS Co-owner/moderator**************************************See what's free at http://www.aol.com.

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[Guest guest]

Wow, to have to deal with this as a kid, what a bugger. Your childhood medical records have to be on microfish. They have to be kept forever. There may be a surgery report and pathology report from the surgeries, and that may give you the dx.

You know, if the eating right and taking care of yourself is working where you can still function and work=- keep doing it!

I know the frustration of not finding anything on scans, etc-- but sarc if it is in the blood stream and is creating vasculitis, may not show up on scans.

I wonder if you can get your MD's to run ANA (anti-nuclear antibodies) and IgE, IgG, and immuno-assays. This could give them alot of info, if they look for the TNF-a, TNF-b, Lymes, etc. There is a whole list of tests and blood work- somewhere on the site. I'll see if I can find it-- I lost my favorites when my puter crashed last winter, so will need some time.

Look also at www.stopsarcoidosis.org and check the info-- they have a great list of questions and articles.

Take care,

Tracie************************************** See what's free at http://www.aol.com.

[Guest guest]

Tracie,

I was reading your post to Clare and I wanted to tell you something

interesting. I have had positive ANA's off and on for years and they

keep dismissing them. When I ask why it is positive and what it can

mean, they just shake their heads and say " I don't know " .

Interesting, huh?

Terri G.

>

> Wow, to have to deal with this as a kid, what a bugger. Your childhood

> medical records have to be on microfish. They have to be kept forever.

There may

> be a surgery report and pathology report from the surgeries, and that

may give

> you the dx.

> You know, if the eating right and taking care of yourself is working

where

> you can still function and work=- keep doing it!

> I know the frustration of not finding anything on scans, etc-- but

sarc if it

> is in the blood stream and is creating vasculitis, may not show up on

scans.

> I wonder if you can get your MD's to run ANA (anti-nuclear antibodies)

and

> IgE, IgG, and immuno-assays. This could give them alot of info, if

they look

> for the TNF-a, TNF-b, Lymes, etc. There is a whole list of tests and

blood

> work- somewhere on the site. I'll see if I can find it-- I lost my

favorites when

> my puter crashed last winter, so will need some time.

>

> Look also at www.stopsarcoidosis.org and check the info-- they have a

great

> list of questions and articles.

>

> Take care,

> Tracie

>

>

> **************************************

> See what's free at

> http://www.aol.com.

>

[Guest guest]

Thanks for the upbeat comments about keep on trucking. I needed that. In regards to finding my medical records...I don't have a clue where to start on that one. My first tests, operations, etc. were in 1948 at the Old Children's Hospital in Seattle, WA. The doctors were from the University of Washington and that's about all I know about my past there. The hospital burnt down in later years and there is a new Children's hospital in Seattle. Where would the records be now??? But yes I will check around the internet sites you mentioned about those tests. Not sure if my doctor is up to following through at this point...but it does not hurt to try. You have been very helpful...more than you know. You seem to be right on top of the STOP SARC issues as well. Having faith in ourselves and our ability to heal plays a big part in coping with the daily grind. Thanks, Claretiodaat@... wrote: Wow, to have to deal with this as a kid, what a bugger. Your childhood medical records have to be on microfish. They have to be kept forever. There may be a surgery report and pathology report from the surgeries, and that may give you the dx.You know, if the eating right and taking care of yourself is working where you can still function and work=- keep doing it!

I know the frustration of not finding anything on scans, etc-- but sarc if it is in the blood stream and is creating vasculitis, may not show up on scans. I wonder if you can get your MD's to run ANA (anti-nuclear antibodies) and IgE, IgG, and immuno-assays. This could give them alot of info, if they look for the TNF-a, TNF-b, Lymes, etc. There is a whole list of tests and blood work- somewhere on the site. I'll see if I can find it-- I lost my favorites when my puter crashed last winter, so will need some time.Look also at www.stopsarcoidosis.org and check the info-- they have a great list of questions and articles. Take care,Tracie**************************************See what's free at http://www.aol.com.

Food fight? Enjoy some healthy debatein the Yahoo! Answers Food Drink Q&A.

[Guest guest]

Clare. I'd make a call to the Medical Records dept. of the newer hospital & ask for the director of that department. If she's worth her salt, she'll know or find out where those records went or if they were destroyed in the fire.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: SjorgrensDate: Wed, 23 May 2007 11:37:27 -0700 (PDT)

Thanks for the upbeat comments about keep on trucking. I needed that. In regards to finding my medical records...I don't have a clue where to start on that one. My first tests, operations, etc. were in 1948 at the Old Children's Hospital in Seattle, WA. The doctors were from the University of Washington and that's about all I know about my past there. The hospital burnt down in later years and there is a new Children's hospital in Seattle. Where would the records be now???

But yes I will check around the internet sites you mentioned about those tests. Not sure if my doctor is up to following through at this point...but it does not hurt to try.

You have been very helpful...more than you know. You seem to be right on top of the STOP SARC issues as well. Having faith in ourselves and our ability to heal plays a big part in coping with the daily grind.

Thanks,

Claretiodaat (AT) aol (DOT) com wrote:

Wow, to have to deal with this as a kid, what a bugger. Your childhood medical records have to be on microfish. They have to be kept forever. There may be a surgery report and pathology report from the surgeries, and that may give you the dx.You know, if the eating right and taking care of yourself is working where you can still function and work=- keep doing it! I know the frustration of not finding anything on scans, etc-- but sarc if it is in the blood stream and is creating vasculitis, may not show up on scans. I wonder if you can get your MD's to run ANA (anti-nuclear antibodies) and IgE, IgG, and immuno-assays. This could give them alot of info, if they look for the TNF-a, TNF-b, Lymes, etc. There is a whole list of tests and blood work- somewhere on the site. I'll see if I can find it-- I lost my favorites when my puter crashed last winter, so will need some time.Look also at www.stopsarcoidosis.org and check the info-- they have a great list of questions and articles. Take care,Tracie**************************************See what's free at http://www.aol.com.

Food fight? Enjoy some healthy debatein the Yahoo! Answers Food Drink Q & A.

More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

[Guest guest]

Thanks Rose; I will get on that thought straight away. I don't know why I did not think of it???? Well I have in the past....but it seemed so remote or impossible. But with others, such as yourself think it is possible so I guess it is worth the price of a phone call. Will let you know what I find out any info. Have a pleasant Memorial day.Rose wrote: Clare. I'd make a call to the Medical Records dept. of the newer

hospital & ask for the director of that department. If she's worth her salt, she'll know or find out where those records went or if they were destroyed in the fire. Ramblin' Rose Moderator From: Clare Weeman <cweeman (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: SjorgrensDate: Wed, 23 May 2007 11:37:27 -0700 (PDT) Thanks for the upbeat comments about keep on trucking. I needed that. In regards to finding my medical records...I don't have a clue where to start on that one. My first tests, operations, etc. were in 1948 at the Old Children's Hospital in Seattle, WA. The doctors were from the University of Washington and that's about all I know about my past there. The hospital burnt down in later years and there is a new Children's hospital in Seattle. Where would the records be now??? But yes I will check around the internet sites you mentioned about those tests. Not sure if my doctor is up to following through at this point...but it does not hurt to try. You have been very helpful...more than you know. You seem to be right on top of the STOP SARC issues as well. Having faith in ourselves and our ability to heal plays a big part in coping with the daily grind. Thanks, Claretiodaat (AT) aol (DOT) com wrote: Wow, to have to deal with this as a kid, what a bugger. Your childhood medical records have to be on microfish. They have to be kept forever. There may be a surgery report and pathology report from the surgeries, and that may give you the dx.You know, if the eating right and taking care of yourself is working where you can still function and work=- keep doing it! I know the frustration of not finding anything on scans, etc-- but sarc if it is in the blood stream and is creating vasculitis, may not show up on scans. I wonder if you can get your MD's to run ANA (anti-nuclear antibodies) and IgE, IgG, and immuno-assays. This could give them alot of info, if they look for the TNF-a,

TNF-b, Lymes, etc. There is a whole list of tests and blood work- somewhere on the site. I'll see if I can find it-- I lost my favorites when my puter crashed last winter, so will need some time.Look also at www.stopsarcoidosis.org and check the info-- they have a great list of questions and articles. Take care,Tracie**************************************See what's free at http://www.aol.com. Food fight? Enjoy some healthy debatein the Yahoo! Answers Food Drink Q & A. More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

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[Guest guest]

I have had positive ANA's off and on for years and they

keep dismissing them. When I ask why it is positive and what it can

mean, they just shake their heads and say "I don't know

Says alot doesn't it. This is where we have to print these articles and take them in with us. Our MD's aren't going to know what step to take next-- because it is new info-- but at least the geneticists, and the immunologists and neuroscientists have a starting place to see what will assist that missing proteins job.

************************************** See what's free at http://www.aol.com.