New Member

[Guest guest]

Eddie from Georgia,

How you are feeling now. I have pain that is with every day. I feel for you

about laying flat. I elevate my upper body when I sleep to lower pain and

pressure. OOOO my names Greg from Texas aka Krumdawg.

Let just say I pray that you have many pain free days.

Greg

>

> Subject: New member

> To: " Neurosarcoidosis " <Neurosarcoidosis >

> Date: Wednesday, April 15, 2009, 11:29 PM

>

>

> Hello folks. My name is Eddie, from Georgia. I am 42 and have suffered from

recurring bouts of headaches that have become chronic. Finally, I found a great

neurologist who was determined to help me and ran a whole bunch of tests, as

usual everything came back normal except that I had a very high angiotensin

converting enzyme level. I am having nystagmus as well as a palsy on one side of

my face that seems to be getting worse over time. The doc seems convinced that

it is sarcoidosis and is re running the blood and has sent me for a chest xray.

I am glad it finally has a name but don't know what the future holds. Would love

some feedback. God Bless

>

> Sent from my iPod

>

[Guest guest]

Eddie

I take a lot of medicine so sleeping in the bed is not a problem. I can sleep sitting up in waiting rooms, at the computer desk and in my rocking chair! My problem is common with neurosarc, from what I've read in here and that is I'm on a reverse sleep pattern. I'm usually awake most if not all night and sleep during the day.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

From: Eddie Nester <eddienester@ yahoo.com>Subject: New memberTo: "Neurosarcoidosis@ yahoogroups. com" <Neurosarcoidosis@ yahoogroups. com>Date: Wednesday, April 15, 2009, 11:29 PM

Hello folks. My name is Eddie, from Georgia. I am 42 and have suffered from recurring bouts of headaches that have become chronic. Finally, I found a great neurologist who was determined to help me and ran a whole bunch of tests, as usual everything came back normal except that I had a very high angiotensin converting enzyme level. I am having nystagmus as well as a palsy on one side of my face that seems to be getting worse over time. The doc seems convinced that it is sarcoidosis and is re running the blood and has sent me for a chest xray. I am glad it finally has a name but don't know what the future holds. Would love some feedback. God BlessSent from my iPod

[Guest guest]

Krumdawg..thanks for the kind words and your prayers. I will pray for you as well and please know that you can contact me anytime@eddienester@.... God bless you. I would be interested in hearing more about your illness and how you deal with it.EddieSent from my iPod

Eddie from Georgia,

How you are feeling now. I have pain that is with every day. I feel for you about laying flat. I elevate my upper body when I sleep to lower pain and pressure. OOOO my names Greg from Texas aka Krumdawg.

Let just say I pray that you have many pain free days.

Greg

>

> Subject: New member

> To: "Neurosarcoidosis " <Neurosarcoidosis >

> Date: Wednesday, April 15, 2009, 11:29 PM

>

>

> Hello folks. My name is Eddie, from Georgia. I am 42 and have suffered from recurring bouts of headaches that have become chronic. Finally, I found a great neurologist who was determined to help me and ran a whole bunch of tests, as usual everything came back normal except that I had a very high angiotensin converting enzyme level. I am having nystagmus as well as a palsy on one side of my face that seems to be getting worse over time. The doc seems convinced that it is sarcoidosis and is re running the blood and has sent me for a chest xray. I am glad it finally has a name but don't know what the future holds. Would love some feedback. God Bless

>

> Sent from my iPod

>

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[Guest guest]

Glad I found you guys. Here's my story (briefly) 8 years ago I lost the use of

my right arm (went through all the tests and Docs (you all know the drill) Then

the spots in the lungs and yearly tests. Hundreds of appointments. 70% of

movement came back in arm but was replaced with pain. Started getting URI

several times a year. Three years ago it didn't go away got Cat Scan and was

told I had Cancer (same type my Father passed away from the year before) Pet

Scan showed over 30 enlarged lymph nodes and lung involvement.. For 3 weeks I

was told it was Cancer intill Biopsy came back. Curable Cancer or Incurable

AutoImmune disease?? Great choice. Was on high amounts of Neurontin which got

rid of pain but gave me Narcolepsy (few years before diagnosed with Sarcoid).

Then on 80mg of Prednesone, Methotrexate and Plaquinel after a year and a half

went in remission for 6 weeks then it got bad. Pnemonia 4 times in 7 months,

Hospitalized with double pneumonia, plurel effusion, atelectasis and septic (105

fever). Now off almost all pain meds,oxy 30 was the only thing that worked.

Trying to get approved for Inflibimix and it's moving into my joints.

Pulmonologist says he doesn't know if it's from Sarcoid or meds.

Pain is bad, breathing is ok for the moment. Guess I just want to know if anyone

has a similar story or components and would like peoples thought and advice.

Just knowing there are others would help

Thanks

mitch sarcoid1203@...

[Guest guest]

Mitch,

You've got more than 600 friends that understand your path. Darlene and I took over the group from it's original owner 4 or 5 yrs ago-- and we were just 110 people. We've gotten the word out, and it really is a blessing for all of us that our wonderful moderators, Rose, , Debbie, Marla, Darlene and myself-- are able to continue on with researching and looking for answers that we can take to our MD's.

If you haven't found www.sarcoidosissharma.com do so--- he is a wonderful MD in Los Angeles, and has a resource of info that will help. He can also be a contact for your MD's. I was fortunate to get into a clinical trial he headed up on Remicade-- LA got 4 people (I was the 4th) and Denver had 5, Seattle had 5-- everything else went back east and over to Europe-- only 125 people worldwide were on this trial-- and for me, it helped so much! I still keep contact with dr. Sharma, and actually need to make a trip down there-- I'm 10 hour drive north of LA-- so it's a long trip and flying is hard when you're on oxygen.

As for the future-- sarcoidosis rarely kills us. The problems and challenges brought about by the structure of our organs being scarred with granulomas can for the most part be dealt with. Immunosupressants mean that we have to be prudent in how we go about our daily lives--- washing those hands is so important-- drinking from glasses and coffee cups at restaurants means that you check for lipstick, and ask for straws--and if the flu hits your area-- stay home, shop online, use common sense when you do have to go out and about. At church-- pass on the "Pass the peace hugs" (we call it the pass the crud time) and when someone forces you into a handshake, grab their arm or shirtsleeve-- and control the contact. It helps with the hand crusher syndrome-ites also-- a firm handshake is one thing, but add arthritis and it's bad news..

Any, I am so glad you have found that you don't have to do this alone-- all our members have access to this forum-- and so you can get way more input than you ever thought you'd need.

Keep the faith,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Wednesday, October 28, 2009 6:30:28 AMSubject: Re: New Member

Tracie,

I just read two e-mails that I got this am, one from someone who had gained 100 pounds and lost half of it (I gained between 40-50 over the last 3 years) and then the personal one from you. I actually cried both for you, with everything you have gone through but to be honest for me because alot sounds so familiar and I'm afraid of the future but also because I realize I'm not alone. I have not run into many people in NE PA that have Sarcoid and no one that has it to my extent. My Pulmonologist who's supposed to be an "expert" makes me feel like I'm the oddball with my symptoms and the responding to then not responding to the meds and just after 12 hours of reading posts I know I'm not crazy. Thank you and thanks to everyone here for just letting me know there's someone to talk to who will understand me.

Thank you

Mitch New Member

Glad I found you guys. Here's my story (briefly) 8 years ago I lost the use of my right arm (went through all the tests and Docs (you all know the drill) Then the spots in the lungs and yearly tests. Hundreds of appointments. 70% of movement came back in arm but was replaced with pain. Started getting URI several times a year. Three years ago it didn't go away got Cat Scan and was told I had Cancer (same type my Father passed away from the year before) Pet Scan showed over 30 enlarged lymph nodes and lung involvement. . For 3 weeks I was told it was Cancer intill Biopsy came back. Curable Cancer or Incurable AutoImmune disease?? Great choice. Was on high amounts of Neurontin which got rid of pain but gave me Narcolepsy (few years before diagnosed with Sarcoid). Then on 80mg of Prednesone, Methotrexate and Plaquinel after a year and a half went in remission for 6 weeks then it got bad. Pnemonia 4 times in 7 months, Hospitalized with double pneumonia,

plurel effusion, atelectasis and septic (105 fever). Now off almost all pain meds,oxy 30 was the only thing that worked. Trying to get approved for Inflibimix and it's moving into my joints. Pulmonologist says he doesn't know if it's from Sarcoid or meds.Pain is bad, breathing is ok for the moment. Guess I just want to know if anyone has a similar story or components and would like peoples thought and advice. Just knowing there are others would helpThanksmitch sarcoid1203@ aol.com

[Guest guest]

Hi ,WELCOME to our group.You will find some kind,willing and knowledge members on this site. I have sarcoidosis in my lungs,eyes, bones and lesion on my brain.KNOWING I AM NOT ALONE ON THIS JOURNEY HAS HELPED ME.I AM ON NEURONTIN, EFFEXOR XR,ANTIVERT,BENICAR,ACTOS,VITIMIN D,NORVASC,GLUCOPHAGE,STARLIX,PLAQUENIL,PREDNISONE AND LARAZEPAM.I BECAME DIABETIC AND WAS DIAGNOSISED WITH HYPERTENSION AFTER BEING DIAGNOSED WITH NEURO SARCORDOSIS THIS LAST YEAR.PRESENTLY I HAVE A FLAIR UP AS FAR AS THE SARCOID ARTHIRITIS IS CONCERCERN.MY RIGHT AND HAS TURNED DARK AND THE SKIN IS HARD AND RUBBERY.THE PAIN IS IN BOTH ANKLES,BOTH RISK,ONTOP OF BOTH HANDS AND ON TOP OF BOTH FEET.SOME TREATMENT HAVE BEEN LIMITED BECAUSE OF LOW BLOOD PLATELETES. I HAVE TO GET A MRI OF MY LUNGS IN

NOVEMBER,X-RAY SHOW THAT MY LUNGS HAVE GOTTEN WORSE.I TAKE MEDS FOR DEPRESSION.I WAS DEPRESSED BEFORE BEING DIAGNOSED. OVERALL I FEEL OK DISPITE THE SPREAD OF THE DISEASE.MY BRAIN AND BONES BOTHER ME THE MOST.I LOST MY HEARING IN MY LEFT EAR AFTER BEING DIAGNOSED WITH NEUROSARCOIDOSIS.MY LEFT SIDE OF MY FACS AND HEAD IS NUMB.I FEEL ALOT OF ELECTICAL SHOCKS IN MY HEAD AND IT REALLY FRIGHTENS ME.SOMETIMES MY WHOLE HEAD AND FACE GET NUMB TEMPORARILY.I AM IN THERAPHY.IT HELPS ME TO DEAL WITH THIS DISEASE AND MY FEARS. YOU ARE IN THE RIGHT PLACE AT THE RIGHT TIME WELCOME AND BE BLESSED.

To: Neurosarcoidosis Sent: Tue, October 27, 2009 6:19:47 PMSubject: New Member

Glad I found you guys. Here's my story (briefly) 8 years ago I lost the use of my right arm (went through all the tests and Docs (you all know the drill) Then the spots in the lungs and yearly tests. Hundreds of appointments. 70% of movement came back in arm but was replaced with pain. Started getting URI several times a year. Three years ago it didn't go away got Cat Scan and was told I had Cancer (same type my Father passed away from the year before) Pet Scan showed over 30 enlarged lymph nodes and lung involvement. . For 3 weeks I was told it was Cancer intill Biopsy came back. Curable Cancer or Incurable AutoImmune disease?? Great choice. Was on high amounts of Neurontin which got rid of pain but gave me Narcolepsy (few years before diagnosed with Sarcoid). Then on 80mg of Prednesone, Methotrexate and Plaquinel after a year and a half went in remission for 6 weeks then it got bad. Pnemonia 4 times in 7 months, Hospitalized with

double pneumonia, plurel effusion, atelectasis and septic (105 fever). Now off almost all pain meds,oxy 30 was the only thing that worked. Trying to get approved for Inflibimix and it's moving into my joints. Pulmonologist says he doesn't know if it's from Sarcoid or meds.

Pain is bad, breathing is ok for the moment. Guess I just want to know if anyone has a similar story or components and would like peoples thought and advice. Just knowing there are others would help

Thanks

mitch sarcoid1203@ aol.com