Update

[Guest guest]

The doctor at USC LA is Om Sharma, M.D. His website is www.sarcoidosissharma.com. I know that one of the many docs that have trained (did his Fellowship) under Dr. Sharma is Shahriar Ghodsian, M.D. He was last I knew working as a critical care/pulmonoligist in the LA area. He was one of the docs that helped with the infliximab clinical trial in L.A.

tracie

To: Neurosarcoidosis Sent: Thu, June 10, 2010 11:34:36 AMSubject: Re: Update

Thank you for your inputs ....I just don't know how to educate my doctors if they don't listen. I had one that blew me off as it is all in my head and most say "its not sarc"...

I finally get a doctor who trained under the doctor in Southern California Um or ohm can't recall and so he is very knowledgable, and the only one to treat all my medical issues but is now leaving and moving to Texas

From: Marla Bramer <mebramer (AT) gmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, June 9, 2010 8:53:35 PMSubject: Re: Update

My MRI showed NO Sarc too. However, my Neurologist, said that the granulomas are so small, they don't always show up, and he pointed out where he believes I have the granulomas due to my symptoms, in the base of the brain and all down the spine. Also like Tracie said earlier, it could be vasculitis related to the Sarc. The hardest part of this Disease is it doesn't scream "Sarcodosis" . Just because it's neg. does not mean it's not there. My Neurologist completely believes I have NeuroSarcodosis. So don't be down, just educate your docs., that's what many of us have had to do. Hang in there. Marla

On Wed, Jun 9, 2010 at 5:47 PM, <dvoegele (AT) verizon (DOT) net> wrote:

Had mri done. I have stenosis L4-S1 minor disk bulge and hemangioma throughout my thoracic spine. No sarc however. Sent via BlackBerry by AT & T

[Guest guest]

Yes. But I am way north. Sent via BlackBerry by AT&TDate: Thu, 10 Jun 2010 17:18:22 -0700 (PDT)To: <Neurosarcoidosis >Subject: Re: Update The doctor at USC LA is Om Sharma, M.D. His website is www.sarcoidosissharma.com. I know that one of the many docs that have trained (did his Fellowship) under Dr. Sharma is Shahriar Ghodsian, M.D. He was last I knew working as a critical care/pulmonoligist in the LA area. He was one of the docs that helped with the infliximab clinical trial in L.A. tracie From: Dianna Voegele <dvoegele (AT) verizon (DOT) net>To: Neurosarcoidosis Sent: Thu, June 10, 2010 11:34:36 AMSubject: Re: Update Thank you for your inputs ....I just don't know how to educate my doctors if they don't listen. I had one that blew me off as it is all in my head and most say "its not sarc"... I finally get a doctor who trained under the doctor in Southern California Um or ohm can't recall and so he is very knowledgable, and the only one to treat all my medical issues but is now leaving and moving to Texas From: Marla Bramer <mebramer (AT) gmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, June 9, 2010 8:53:35 PMSubject: Re: Update My MRI showed NO Sarc too. However, my Neurologist, said that the granulomas are so small, they don't always show up, and he pointed out where he believes I have the granulomas due to my symptoms, in the base of the brain and all down the spine. Also like Tracie said earlier, it could be vasculitis related to the Sarc. The hardest part of this Disease is it doesn't scream "Sarcodosis" . Just because it's neg. does not mean it's not there. My Neurologist completely believes I have NeuroSarcodosis. So don't be down, just educate your docs., that's what many of us have had to do. Hang in there. Marla On Wed, Jun 9, 2010 at 5:47 PM, <dvoegele (AT) verizon (DOT) net> wrote: Had mri done. I have stenosis L4-S1 minor disk bulge and hemangioma throughout my thoracic spine. No sarc however. Sent via BlackBerry by AT & T

[Guest guest]

Dianna, he probably trained under Dr. Sharma, I think at UCLA. Some of these docs, especially if they have seen you themselves, are willing to consult/direct care in collaboration with your local docs. You may have to take in some literature to convince your locals that these guys/gals really are experts. If they did a little research--perish the thought--they would figure that out themselves. But you are probably going to have to do the work. We can direct you to some resources if you want to pursue that.

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: dvoegele@...Date: Thu, 10 Jun 2010 11:34:36 -0700Subject: Re: Update

Thank you for your inputs ....I just don't know how to educate my doctors if they don't listen. I had one that blew me off as it is all in my head and most say "its not sarc"...

I finally get a doctor who trained under the doctor in Southern California Um or ohm can't recall and so he is very knowledgable, and the only one to treat all my medical issues but is now leaving and moving to Texas

To: Neurosarcoidosis Sent: Wed, June 9, 2010 8:53:35 PMSubject: Re: Update

My MRI showed NO Sarc too. However, my Neurologist, said that the granulomas are so small, they don't always show up, and he pointed out where he believes I have the granulomas due to my symptoms, in the base of the brain and all down the spine. Also like Tracie said earlier, it could be vasculitis related to the Sarc. The hardest part of this Disease is it doesn't scream "Sarcodosis". Just because it's neg. does not mean it's not there. My Neurologist completely believes I have NeuroSarcodosis. So don't be down, just educate your docs., that's what many of us have had to do. Hang in there. Marla

On Wed, Jun 9, 2010 at 5:47 PM, <dvoegele (AT) verizon (DOT) net> wrote:

Had mri done. I have stenosis L4-S1 minor disk bulge and hemangioma throughout my thoracic spine. No sarc however. Sent via BlackBerry by AT & T

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

[Guest guest]

Yes he did train under Dr Sharma...and now he is leaving...since I work for a hospital I have to go through the process

of seeing this doctors replacement and upon doing so tell that doctor that I don't wish to be seen by them and wish for a referral.

There is apparently a doctor at UC who is very knowledgable with Sarcoidosis. But if you have any ideas in the Bay area

I am all ears/eyes

To: neurosarcoidosis Sent: Thu, June 10, 2010 6:51:37 PMSubject: RE: Update

Dianna, he probably trained under Dr. Sharma, I think at UCLA. Some of these docs, especially if they have seen you themselves, are willing to consult/direct care in collaboration with your local docs. You may have to take in some literature to convince your locals that these guys/gals really are experts. If they did a little research--perish the thought--they would figure that out themselves. But you are probably going to have to do the work. We can direct you to some resources if you want to pursue that.

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis@ yahoogroups. comFrom: dvoegele (AT) verizon (DOT) netDate: Thu, 10 Jun 2010 11:34:36 -0700Subject: Re: Update

Thank you for your inputs ....I just don't know how to educate my doctors if they don't listen. I had one that blew me off as it is all in my head and most say "its not sarc"...

I finally get a doctor who trained under the doctor in Southern California Um or ohm can't recall and so he is very knowledgable, and the only one to treat all my medical issues but is now leaving and moving to Texas

From: Marla Bramer <mebramer (AT) gmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, June 9, 2010 8:53:35 PMSubject: Re: Update My MRI showed NO Sarc too. However, my Neurologist, said that the granulomas are so small, they don't always show up, and he pointed out where he believes I have the granulomas due to my symptoms, in the base of the brain and all down the spine. Also like Tracie said earlier, it could be vasculitis related to the Sarc. The hardest part of this Disease is it doesn't scream "Sarcodosis" . Just because it's neg. does not mean it's not there. My Neurologist completely believes I have NeuroSarcodosis. So don't be down, just educate your docs., that's what many of us have had to do. Hang in there. Marla

On Wed, Jun 9, 2010 at 5:47 PM, <dvoegele (AT) verizon (DOT) net> wrote:

Had mri done. I have stenosis L4-S1 minor disk bulge and hemangioma throughout my thoracic spine. No sarc however. Sent via BlackBerry by AT & T

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

[Guest guest]

Perhaps you could contact your former doc & ask if he would be willing to speak with the locals. I live near Indianapolis & initially a sarc specialist in Atlanta gave recommendations to my local neuro. After he moved to land & started specializing in stroke, I saw Baughman in Cincinnati & he communicated with the local docs.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: dvoegele@...Date: Thu, 10 Jun 2010 19:02:04 -0700Subject: Re: Update

Yes he did train under Dr Sharma...and now he is leaving...since I work for a hospital I have to go through the process

of seeing this doctors replacement and upon doing so tell that doctor that I don't wish to be seen by them and wish for a referral.

There is apparently a doctor at UC who is very knowledgable with Sarcoidosis. But if you have any ideas in the Bay area

I am all ears/eyes

To: neurosarcoidosis Sent: Thu, June 10, 2010 6:51:37 PMSubject: RE: Update

Dianna, he probably trained under Dr. Sharma, I think at UCLA. Some of these docs, especially if they have seen you themselves, are willing to consult/direct care in collaboration with your local docs. You may have to take in some literature to convince your locals that these guys/gals really are experts. If they did a little research--perish the thought--they would figure that out themselves. But you are probably going to have to do the work. We can direct you to some resources if you want to pursue that.

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis@ yahoogroups. comFrom: dvoegele (AT) verizon (DOT) netDate: Thu, 10 Jun 2010 11:34:36 -0700Subject: Re: Update

Thank you for your inputs ....I just don't know how to educate my doctors if they don't listen. I had one that blew me off as it is all in my head and most say "its not sarc"...

I finally get a doctor who trained under the doctor in Southern California Um or ohm can't recall and so he is very knowledgable, and the only one to treat all my medical issues but is now leaving and moving to Texas

From: Marla Bramer <mebramer (AT) gmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, June 9, 2010 8:53:35 PMSubject: Re: Update My MRI showed NO Sarc too. However, my Neurologist, said that the granulomas are so small, they don't always show up, and he pointed out where he believes I have the granulomas due to my symptoms, in the base of the brain and all down the spine. Also like Tracie said earlier, it could be vasculitis related to the Sarc. The hardest part of this Disease is it doesn't scream "Sarcodosis" . Just because it's neg. does not mean it's not there. My Neurologist completely believes I have NeuroSarcodosis. So don't be down, just educate your docs., that's what many of us have had to do. Hang in there. Marla

On Wed, Jun 9, 2010 at 5:47 PM, <dvoegele (AT) verizon (DOT) net> wrote:

Had mri done. I have stenosis L4-S1 minor disk bulge and hemangioma throughout my thoracic spine. No sarc however. Sent via BlackBerry by AT & T

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

[Guest guest]

Wonderful news! Please keep us updated. It is really great when someone

gets great news! Wish we all could..............

Hugs,

Darlene

NS Co-Owner/Moderator

Update

>I have just had a most successful visit to my specialist. The lymphocyte

>level has now been reduced to the point where he wants it to be, with the

>result that the ACE level has dropped. This means that the MTX is now at

>the correct dosage and things should start to improve. Next visit is

>slated for September, which is also a good sign. It also means that I

>won't be going down the Remicade (Infliximab) route either. Good news all

>round.

>

> Best regards,

>

>

>

>

> ------------------------------------

>

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

> The Neurosarcoidosis Community

>

>

>

> 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

>

>

[Guest guest]

Good News Kieth, Glad to hear it, I was on Methotrexate for 4 years with success and it held my Neuro symptoms at bay, I hope it will hold yours for many years too.  Blessings, Marla

 

I have just had a most successful visit to my specialist. The lymphocyte level has now been reduced to the point where he wants it to be, with the result that the ACE level has dropped. This means that the MTX is now at the correct dosage and things should start to improve. Next visit is slated for September, which is also a good sign. It also means that I won't be going down the Remicade (Infliximab) route either. Good news all round.

Best regards,

[Guest guest]

Sounds good, . What dose of Mtx are you on now?

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: mebramer@...Date: Sat, 17 Jul 2010 11:30:02 -0600Subject: Re: Update

Good News Kieth, Glad to hear it, I was on Methotrexate for 4 years with success and it held my Neuro symptoms at bay, I hope it will hold yours for many years too. Blessings, Marla

I have just had a most successful visit to my specialist. The lymphocyte level has now been reduced to the point where he wants it to be, with the result that the ACE level has dropped. This means that the MTX is now at the correct dosage and things should start to improve. Next visit is slated for September, which is also a good sign. It also means that I won't be going down the Remicade (Infliximab) route either. Good news all round.Best regards,

Hotmail is redefining busy with tools for the New Busy. Get more from your inbox. See how.

[Guest guest]

Yes I hope the methotrexate works out well for you. jenny was on that for a few years before they moved her to the Cellcept. We had fairly good results with the methotrexate in pill form and then with the injection form as well. Continue to be well.Matt

I have just had a most successful visit to my specialist. The lymphocyte level has now been reduced to the point where he wants it to be, with the result that the ACE level has dropped. This means that the MTX is now at the correct dosage and things should start to improve. Next visit is slated for September, which is also a good sign. It also means that I won't be going down the Remicade (Infliximab) route either. Good news all round.

Best regards,

[Guest guest]

Glad you are feeling better!

PJ

>

> Wanted to share the joy besides the trauma and insanity..

> But after doing a regiment for the worm/parasite situation which I will need

to revisit a couple of more times according to my docs- I am starting to feel

loads and loads better..

> Amazing really!

> I've actually had some firm BM's..

> So, ain't that sumptin'.. Just when I start loosing faith..

> I am super gleeful for this..

>

> Jodi

>

[Guest guest]

Jodi,

Congratulations on feeling better...that's so wonderful.

Can you share what you took for the worm/parasite situation, and what your

reaction was to it (d? feeling okay while on it? etc.)

Thanks,

Ellen

>

> Wanted to share the joy besides the trauma and insanity..

> But after doing a regiment for the worm/parasite situation which I will need

to revisit a couple of more times according to my docs- I am starting to feel

loads and loads better..

> Amazing really!

> I've actually had some firm BM's..

> So, ain't that sumptin'.. Just when I start loosing faith..

> I am super gleeful for this..

>

> Jodi

>

[Guest guest]

At 09:35 AM 10/18/2010, you wrote:

am starting to feel loads and

loads better..

Hooray for that!

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

Wow Ellen,

This is a pretty loaded question..

So when I have some time I will post as it has been and extremely multi-faceted

process. OYY!

Jodi

> >

> > Wanted to share the joy besides the trauma and insanity..

> > But after doing a regiment for the worm/parasite situation which I will need

to revisit a couple of more times according to my docs- I am starting to feel

loads and loads better..

> > Amazing really!

> > I've actually had some firm BM's..

> > So, ain't that sumptin'.. Just when I start loosing faith..

> > I am super gleeful for this..

> >

> > Jodi

> >

>

[Guest guest]

great news!!!!

eileen

>

> Wanted to share the joy besides the trauma and insanity..

> But after doing a regiment for the worm/parasite situation which I will need

to revisit a couple of more times according to my docs- I am starting to feel

loads and loads better..

> Amazing really!

> I've actually had some firm BM's..

> So, ain't that sumptin'.. Just when I start loosing faith..

> I am super gleeful for this..

>

> Jodi

>

[Guest guest]

Hi guys sorry I have not been around. I have been working on my 86 CJ-7. So

weight is really fluctuating, hunger is stronger even tho I am down to 2 mg of

Prednisone oo and 12-25-2010 is the last day I take it and then I will be off

the the once blessed and twice d cursed med. OO the VA has yet to accept my

Neuro as a Gulf War Illness. But they have rated me a total of 50% Disability

for my ankles and my lower back. I do have a appeal in progress for my sinus and

my PTSD and my Neuro .

I hope you are all doing well. OO moving to be near the New Va Clinic in Ft

Worth and TCC south a College .

May all be blessed with a cure one day or at least a real long remmission.

Greg

[Guest guest]

Hey, Greg! I've missed you. Can you tell me what 86 CJ-7 is? I can't figure out if it's a vehicle, drug or what! Will your move take you far from your current home? I know that you are very busy; hope you can find time to drop us a line once in awhile. Hopefully your life will be relatively smooth now.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sat, 20 Nov 2010 03:29:51 +0000> Subject: Update> > Hi guys sorry I have not been around. I have been working on my 86 CJ-7. So weight is really fluctuating, hunger is stronger even tho I am down to 2 mg of Prednisone oo and 12-25-2010 is the last day I take it and then I will be off the the once blessed and twice d cursed med. OO the VA has yet to accept my Neuro as a Gulf War Illness. But they have rated me a total of 50% Disability for my ankles and my lower back. I do have a appeal in progress for my sinus and my PTSD and my Neuro . > > I hope you are all doing well. OO moving to be near the New Va Clinic in Ft Worth and TCC south a College . > > > May all be blessed with a cure one day or at least a real long remmission.> > Greg > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > 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 > >

[Guest guest]

Sweet Rose

86 CJ-7 is shorthand for a 1986 AMC Jeep CJ-7 Renegade the last real Jeep

that was made before Dodge bought them out.

A real Jeep owner

The Krumdawg Greg

>

>

> Hey, Greg! I've missed you. Can you tell me what 86 CJ-7 is? I can't figure

out if it's a vehicle, drug or what! Will your move take you far from your

current home? I know that you are very busy; hope you can find time to drop us

a line once in awhile. Hopefully your life will be relatively smooth now.

>

>

> Ramblin' Rose

> Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

> > To: Neurosarcoidosis

> > From: krumdawg@...

> > Date: Sat, 20 Nov 2010 03:29:51 +0000

> > Subject: Update

> >

> > Hi guys sorry I have not been around. I have been working on my 86 CJ-7. So

weight is really fluctuating, hunger is stronger even tho I am down to 2 mg of

Prednisone oo and 12-25-2010 is the last day I take it and then I will be off

the the once blessed and twice d cursed med. OO the VA has yet to accept my

Neuro as a Gulf War Illness. But they have rated me a total of 50% Disability

for my ankles and my lower back. I do have a appeal in progress for my sinus and

my PTSD and my Neuro .

> >

> > I hope you are all doing well. OO moving to be near the New Va Clinic in Ft

Worth and TCC south a College .

> >

> >

> > May all be blessed with a cure one day or at least a real long remmission.

> >

> > Greg

> >

> >

> >

> > ------------------------------------

> >

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

> > The Neurosarcoidosis Community

> >

> >

> >

> > 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

> >

> >

[Guest guest]

Same to you Greg, good luck on your appeal. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Hi guys sorry I have not been around. I have been working on my 86 CJ-7. So weight is really fluctuating, hunger is stronger even tho I am down to 2 mg of Prednisone oo and 12-25-2010 is the last day I take it and then I will be off the the once blessed and twice d cursed med. OO the VA has yet to accept my Neuro as a Gulf War Illness. But they have rated me a total of 50% Disability for my ankles and my lower back. I do have a appeal in progress for my sinus and my PTSD and my Neuro .

I hope you are all doing well. OO moving to be near the New Va Clinic in Ft Worth and TCC south a College .

May all be blessed with a cure one day or at least a real long remmission.

Greg

[Guest guest]

Greg, Be well and I hope the move goes smoothly for you. Is there an indication that the Gulf War contributed or caused your Neurosarcoidosis? I know we often wonder if jenny's wasn't brought on by something she came in contact with while working in the flower industry. There was a time that the doctors were trying to find out for us if chemicals used on product brought in form out of country might have been a factor. Take care..MattSubject: UpdateTo: Neurosarcoidosis Date: Friday,

November 19, 2010, 10:29 PM

Hi guys sorry I have not been around. I have been working on my 86 CJ-7. So weight is really fluctuating, hunger is stronger even tho I am down to 2 mg of Prednisone oo and 12-25-2010 is the last day I take it and then I will be off the the once blessed and twice d cursed med. OO the VA has yet to accept my Neuro as a Gulf War Illness. But they have rated me a total of 50% Disability for my ankles and my lower back. I do have a appeal in progress for my sinus and my PTSD and my Neuro .

I hope you are all doing well. OO moving to be near the New Va Clinic in Ft Worth and TCC south a College .

May all be blessed with a cure one day or at least a real long remmission.

Greg

[Guest guest]

Okay, got it. I had a hunch it was a vehicle!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sat, 20 Nov 2010 05:33:02 +0000> Subject: Re: Update> > Sweet Rose> > > 86 CJ-7 is shorthand for a 1986 AMC Jeep CJ-7 Renegade the last real Jeep that was made before Dodge bought them out.> > A real Jeep owner> > The Krumdawg Greg> > > >> > > > Hey, Greg! I've missed you. Can you tell me what 86 CJ-7 is? I can't figure out if it's a vehicle, drug or what! Will your move take you far from your current home? I know that you are very busy; hope you can find time to drop us a line once in awhile. Hopefully your life will be relatively smooth now.> > > > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Sat, 20 Nov 2010 03:29:51 +0000> > > Subject: Update> > > > > > Hi guys sorry I have not been around. I have been working on my 86 CJ-7. So weight is really fluctuating, hunger is stronger even tho I am down to 2 mg of Prednisone oo and 12-25-2010 is the last day I take it and then I will be off the the once blessed and twice d cursed med. OO the VA has yet to accept my Neuro as a Gulf War Illness. But they have rated me a total of 50% Disability for my ankles and my lower back. I do have a appeal in progress for my sinus and my PTSD and my Neuro . > > > > > > I hope you are all doing well. OO moving to be near the New Va Clinic in Ft Worth and TCC south a College . > > > > > > > > > May all be blessed with a cure one day or at least a real long remmission.> > > > > > Greg > > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > 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 > > > > > >

[Guest guest]

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg

[Guest guest]

Good luck with it, Greg. I hope they give you what you most justly deserve! Thank you for serving our country!

Vivien

Subject: Re: UpdateTo: Neurosarcoidosis Date: Sunday, November 21, 2010, 3:55 PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been

allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg

[Guest guest]

Understand completely. We deal with that here with . There is memory loss, speech pattern difficulties and the inability to form words or speak. Mobility issues and a Parkinsons like shake. She can't work either and cant even use the computer any more even if I slowed the mouse down to a crawl. I wish you all the best in finding answers. Try to remain stress free during the move and be well.MattSubject: Re: UpdateTo: Neurosarcoidosis Date: Sunday, November 21, 2010, 3:55

PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg

[Guest guest]

I have the same problems with speech, thinking one thing, but something else comes out, or I just can't say what I want to say, huge memory issues, I just started noticing some shaking, especially when I'm tired, the more tired, the worse it gets. 

Good luck, MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Understand completely.  We deal with that here with .  There is memory loss, speech pattern difficulties and the inability to form words or speak.  Mobility issues and a Parkinsons like shake.  She can't work either and cant even use the computer any more even if I slowed the mouse down to a crawl. 

I wish you all the best in finding answers.  Try to remain stress free during the move and be well.Matt

Subject: Re: UpdateTo: Neurosarcoidosis

Date: Sunday, November 21, 2010, 3:55

PM

 

  It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words.   My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke)  and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

 

 

Greg

[Guest guest]

Count me in on this one.

I've had memory issue's that I just thought were age related but now I'm not sure at all. After this last month's episode that almost landed me in the Hospital for a week or two. I have been worse then ever. In fact it took me 5 minutes to think of the word "episode" , I had to write the whole thing around it until it came to me (and I'm not even sure if that's the word I wanted but it fit so instead of making myself crazy, I went with it),. Since that month's bout with Sarc (the worst in over a year and a half, I can't think of easy words that I use all the time in every day life. It's actually scaring me a bit.

Mitch

Re: Update

To: Neurosarcoidosis

Date: Sunday, November 21, 2010, 3:55

PM

It is that I believe that chemical exposures , un-approved shots and the infamous PB pill could have contributed or caused my Neurosarcoidosis. So I have applied to the VA as a possible Gulf War illness. All of my symptoms' I can apply to my Neurosarcoidosis lead all the way back to 1991. Extreme headaches, extreme sinus blockage, memory lost, depression, lost of balance , well I could go on but also one of my symptoms is the inability at times to speak, pronounce words. My doctors can not identify one thing or a group of things that have caused this. Heck since 1991 I have been misdiagnosed with Hep – B and or Meningitis at least during the initial test but when the actual test for those were done the were negative. So since the Gulf War I have had a lot of issues that I now know were symptoms of Neuro growing. When I found and identified it , it almost took my life (I had a stoke) and since Aug 2008 I have not been allowed to work. Was it the Golf War that caused it or accelerated my Neurosarcoidosis?? That I think is the real question. Not sure if I could prove either one, so lets see if the VA can disprove one or both..

Greg