Re: Re: Long lost friend...

May 19, 2010

Hey Sandy, I'm don't know if you would remember me or not, but I've been here about 8 years myself.. It's really hard to when people look at you and say, but your looking so good.. I've just recently had that said to me and I ended up in the hospital the next day.. anyway glad your back.. Let us know what we can do to help..

Long lost friend...> > > > Dear friends, > > > > I'm not sure if anyone is here who will remember me. I was very active in the group several years ago and it (you) saved my sanity. Long story short, I have been disabled due to some mysterious illness for almost 9 years. I felt certain that its neurosarc from the beginning. The symptoms match, sarc is in my family, Dr. Baughman in Cincinnati thinks its a good possibility, I even got Bells Palsy last year!! But because of no definitive markers I can't get a proper diagnosis or proper treatment. I've lost almost a decade of my life and I find I'm able to do less every year. I doing some new tests soon, but I've learned not to expect anything. > > > > Now something new has developed - a hard lump on my tail bone. It's not a cyst, it doesn't move and it doesn't hurt, but its to the point that I'm uncomfortable lying on my back and sometimes sitting down. It's as if my bone has become misshapen. It's happened slowly. i started noticing it about 3 years ago, but I've never mentioned it to a doctor - I've been made to feel crazy too many times. So get this - I look up the symptom online and it points to something called chordoma. The most common sites for this illness are the tailbone and the base of the skull. Those are the two areas of the spine I have trouble with - lots of headaches and stiffness in the neck, and the growth on the tailbone. And if those two places are affected,symptoms are almost identical to NS - even facial palsy is mentioned.> > > > So that's where I am. I've been meaning to stop by here for months now. I know I'll find support and kindness here and I promise to give it as well. > > > > All the best - > > Sandy> > > > p.s. It's 5:30am - I hope this makes sense! LOL> > > > > > > > ------------------------------------> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > 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 > > > >

May 24, 2010

Sandy, Been out of town, and behind again emails, I spent a whole year fighting our insurance company to get Remicade, as my Neuro symptoms got worse, we finally won with the help of Tracie, and we just did not give up, and I had a firm diagnosis, so hang in there, and let us know if you need help.

Marla

Wow! Rose, Tracie, Marla - I remember all of you! So years go by and hundreds of people join but you guys are still the ones who keep this group alive and kicking! Big hugs to all of you!! To you, too Mitch! Yes, I was here with Shar and Aisha. Aisha saved my life and my sanity. I'm afraid to ask how they are. Maybe one of you could email me privately and fill me in. When I left, Aisha had gotten much worse and was unable to keep up with the group anymore. Thank you all for very good advice and info. I hadn't even considered granulomas because I've never had a sarc dx. As Mitch, it could be a hundred different things. I DONT think its chordoma because I'd be dead by now,LOL, but to realize that lumps in those 2 areas can cause symptoms identical to mine gives me hope that this will lead to a DX finally. Baughmann wants me on Remacade, but I won't be able to get it without a " proper " dx. To say I'm frustrated doesn't cover it. I'm getting desperate. 9 years. I may lose my house. I've already lost my marriage. My baby girl is in college. Life keeps moving along and I'm to sick too keep up. The good news is I have hope. There is so much I want to do! So please pray or burn sage or light a candle or just think of me please - hoping that this new development will be the key to a diagnosis and more importantly treatment. So great to be back here. Love to all of you!Sandy>> > Wow, Sandy, that's something I've never heard of. Would you see an orthopedist or neurosurgeon to check this out? Did your research say what the treatment would be? Good luck with the testing & follow up.> > > Ramblin' Rose> Moderator> > A merry heart is good medicine. Proverbs 17:22> > > > > > > > To: Neurosarcoidosis > > > Date: Mon, 17 May 2010 09:33:58 +0000> > Subject: Long lost friend...> > > > Dear friends, > > > > I'm not sure if anyone is here who will remember me. I was very active in the group several years ago and it (you) saved my sanity. Long story short, I have been disabled due to some mysterious illness for almost 9 years. I felt certain that its neurosarc from the beginning. The symptoms match, sarc is in my family, Dr. Baughman in Cincinnati thinks its a good possibility, I even got Bells Palsy last year!! But because of no definitive markers I can't get a proper diagnosis or proper treatment. I've lost almost a decade of my life and I find I'm able to do less every year. I doing some new tests soon, but I've learned not to expect anything. > > > > Now something new has developed - a hard lump on my tail bone. It's not a cyst, it doesn't move and it doesn't hurt, but its to the point that I'm uncomfortable lying on my back and sometimes sitting down. It's as if my bone has become misshapen. It's happened slowly. i started noticing it about 3 years ago, but I've never mentioned it to a doctor - I've been made to feel crazy too many times. So get this - I look up the symptom online and it points to something called chordoma. The most common sites for this illness are the tailbone and the base of the skull. Those are the two areas of the spine I have trouble with - lots of headaches and stiffness in the neck, and the growth on the tailbone. And if those two places are affected,symptoms are almost identical to NS - even facial palsy is mentioned.> > > > So that's where I am. I've been meaning to stop by here for months now. I know I'll find support and kindness here and I promise to give it as well. > > > > All the best - > > Sandy> > > > p.s. It's 5:30am - I hope this makes sense! LOL> > > > > > > > ------------------------------------> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > 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 > > > >

May 25, 2010

Sandy,

We've not heard from either one for years-- literally. I doubt that Shar is even alive-- and Aisha has moved on with her life.

Is Dr. Baughmann willing to write and oversee your Remicade? The way it works for me is that my G.P sent me to UC where one of the Rheumatologist's was willing to order the Remicade. It shouldn't be as difficult as it was 6, 7 yrs ago-- because there are many more people on it for sarcoidosis.

It is "off-label" meaning that FDA has not (and will not) be approving it for sarc, since they can't get enough people together to form 1000 or more patients for a Phase III Clinical Trial. (So they say.)

You can go to the MESSAGE ARCHIVES AND LINKS-- search by Remicade-- and print out the testimonies along with some research and medical papers that cover the use of Remicade for sarc.

It's a great drug for helping reduce the systemic sarc-induced arthritis, the brain fog, the inside the bone pain.

Just recently, after having spent the last 6-7 yrs on it, I've started to develop cellulitis and lymphedema in the arm where I've always had the infusion. With that issue in mind, for now, I've stopped my infusions and am looking at alternative choices.

Up until summer before last-- when Calif went up in flames, and my lungs went to hell-- I ended up with fluid on my lungs, pneumonia that went undiagnosed because the xrays didn't catch that the lobe had collapsed and folded under itself-- so I spent 5 months without getting the right combination of meds to clear the infection.

It has now effected my lungs to where I have only 46% working surface over the 5 lobes-- and my heart has 3 valves that are working at less than 50%. So the fluid on the lungs is now a constant problem-- even tho there is no infection. My heart is tired enough that it can't clear the fluids-- so I'm at a place where the path I was on is no longer working for me-- so I have decided to follow a Whole Food Supplement program where with fresh veges, fresh fruit (very little since I'm now insulin diabetic) lean protein-- no dairy, wheat or oats- (I tested positive for a reaction to these 3) and I'm hoping that this will help me out. I have lost 16 lbs in 4 wks-- and that has helped my breathing.

It's a brand new program for me-- so I'm not ready to go into detail until I understand it more fully. At this point, I have nothing to lose-- the way I was going was becoming more toxic than to roll the dice and see where this goes...

Do take care,

Tracie

NS co-owner/moderator

To: Neurosarcoidosis Sent: Mon, May 24, 2010 9:36:59 PMSubject: Re: Re: Long lost friend...

Sandy, Been out of town, and behind again emails, I spent a whole year fighting our insurance company to get Remicade, as my Neuro symptoms got worse, we finally won with the help of Tracie, and we just did not give up, and I had a firm diagnosis, so hang in there, and let us know if you need help. Marla

Wow! Rose, Tracie, Marla - I remember all of you! So years go by and hundreds of people join but you guys are still the ones who keep this group alive and kicking! Big hugs to all of you!! To you, too Mitch! Yes, I was here with Shar and Aisha. Aisha saved my life and my sanity. I'm afraid to ask how they are. Maybe one of you could email me privately and fill me in. When I left, Aisha had gotten much worse and was unable to keep up with the group anymore. Thank you all for very good advice and info. I hadn't even considered granulomas because I've never had a sarc dx. As Mitch, it could be a hundred different things. I DONT think its chordoma because I'd be dead by now,LOL, but to realize that lumps in those 2 areas can cause symptoms identical to mine gives me hope that this will lead to a DX finally. Baughmann wants me on Remacade, but I won't be able to get it without a "proper" dx. To say I'm frustrated doesn't cover it. I'm getting

desperate. 9 years. I may lose my house. I've already lost my marriage. My baby girl is in college. Life keeps moving along and I'm to sick too keep up. The good news is I have hope. There is so much I want to do! So please pray or burn sage or light a candle or just think of me please - hoping that this new development will be the key to a diagnosis and more importantly treatment. So great to be back here. Love to all of you!Sandy>> > Wow, Sandy, that's something I've never heard of. Would you see an orthopedist or neurosurgeon to check this out? Did your research say what the treatment would be? Good luck with the testing & follow up.> > > Ramblin' Rose>

Moderator> > A merry heart is good medicine. Proverbs 17:22> > > > > > > > To: Neurosarcoidosis@ yahoogroups. com> > > Date: Mon, 17 May 2010 09:33:58 +0000> > Subject: Long lost friend...> > > > Dear friends, > > > > I'm not sure if anyone is here who will remember me. I was very active in the group several years ago and it (you) saved my sanity. Long story short, I have been disabled due to some mysterious illness for almost 9 years. I felt certain that its neurosarc from the beginning. The symptoms match, sarc is in my family, Dr. Baughman in Cincinnati thinks its a good possibility, I even got Bells Palsy last year!! But because of no definitive

markers I can't get a proper diagnosis or proper treatment. I've lost almost a decade of my life and I find I'm able to do less every year. I doing some new tests soon, but I've learned not to expect anything. > > > > Now something new has developed - a hard lump on my tail bone. It's not a cyst, it doesn't move and it doesn't hurt, but its to the point that I'm uncomfortable lying on my back and sometimes sitting down. It's as if my bone has become misshapen. It's happened slowly. i started noticing it about 3 years ago, but I've never mentioned it to a doctor - I've been made to feel crazy too many times. So get this - I look up the symptom online and it points to something called chordoma. The most common sites for this illness are the tailbone and the base of the skull. Those are the two areas of the spine I have trouble with - lots of headaches and stiffness in the neck, and the growth on the tailbone. And if those two places

are affected,symptoms are almost identical to NS - even facial palsy is mentioned.> > > > So that's where I am. I've been meaning to stop by here for months now. I know I'll find support and kindness here and I promise to give it as well. > > > > All the best - > > Sandy> > > > p.s. It's 5:30am - I hope this makes sense! LOL> > > > > > > > ------------ --------- --------- ------

> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> > > > > > > > Message Archives:-> > http://groups. yahoo.com/ group/Neurosarco idosis/messages> > > > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups. yahoo.com/ group/Neurosarco idosis/database > > > >

May 25, 2010

Tracie, Are you not a surgical candidate for the heart? I would like to hear more about your new Whole food supplement, when your ready to explain, I really want to lose weight, and that is

awesome that you lost 16 lbs. But I find exercise puts me into a pain cycle, I exercise, which means like 10-20 mins on the treadmill level 1-2, then hurt for the next 2-3 days, so when I feel better, exercise is the last thing I want

to do again. So are you starting to feel better? I have been praying for you, and hope that you get some relief. Marla

Sandy,

We've not heard from either one for years-- literally. I doubt that Shar is even alive-- and Aisha has moved on with her life.

Is Dr. Baughmann willing to write and oversee your Remicade? The way it works for me is that my G.P sent me to UC where one of the Rheumatologist's was willing to order the Remicade. It shouldn't be as difficult as it was 6, 7 yrs ago-- because there are many more people on it for sarcoidosis.

It is " off-label " meaning that FDA has not (and will not) be approving it for sarc, since they can't get enough people together to form 1000 or more patients for a Phase III Clinical Trial. (So they say.)

You can go to the MESSAGE ARCHIVES AND LINKS-- search by Remicade-- and print out the testimonies along with some research and medical papers that cover the use of Remicade for sarc.

It's a great drug for helping reduce the systemic sarc-induced arthritis, the brain fog, the inside the bone pain.

Just recently, after having spent the last 6-7 yrs on it, I've started to develop cellulitis and lymphedema in the arm where I've always had the infusion. With that issue in mind, for now, I've stopped my infusions and am looking at alternative choices.

Up until summer before last-- when Calif went up in flames, and my lungs went to hell-- I ended up with fluid on my lungs, pneumonia that went undiagnosed because the xrays didn't catch that the lobe had collapsed and folded under itself-- so I spent 5 months without getting the right combination of meds to clear the infection.

It has now effected my lungs to where I have only 46% working surface over the 5 lobes-- and my heart has 3 valves that are working at less than 50%. So the fluid on the lungs is now a constant problem-- even tho there is no infection. My heart is tired enough that it can't clear the fluids-- so I'm at a place where the path I was on is no longer working for me-- so I have decided to follow a Whole Food Supplement program where with fresh veges, fresh fruit (very little since I'm now insulin diabetic) lean protein-- no dairy, wheat or oats- (I tested positive for a reaction to these 3) and I'm hoping that this will help me out. I have lost 16 lbs in 4 wks-- and that has helped my breathing.

It's a brand new program for me-- so I'm not ready to go into detail until I understand it more fully. At this point, I have nothing to lose-- the way I was going was becoming more toxic than to roll the dice and see where this goes...

Do take care,

Tracie

NS co-owner/moderator

To: Neurosarcoidosis

Sent: Mon, May 24, 2010 9:36:59 PMSubject: Re: Re: Long lost friend...

Sandy, Been out of town, and behind again emails, I spent a whole year fighting our insurance company to get Remicade, as my Neuro symptoms got worse, we finally won with the help of Tracie, and we just did not give up, and I had a firm diagnosis, so hang in there, and let us know if you need help.

Marla

Wow! Rose, Tracie, Marla - I remember all of you! So years go by and hundreds of people join but you guys are still the ones who keep this group alive and kicking! Big hugs to all of you!! To you, too Mitch! Yes, I was here with Shar and Aisha. Aisha saved my life and my sanity. I'm afraid to ask how they are. Maybe one of you could email me privately and fill me in. When I left, Aisha had gotten much worse and was unable to keep up with the group anymore.

Thank you all for very good advice and info. I hadn't even considered granulomas because I've never had a sarc dx. As Mitch, it could be a hundred different things. I DONT think its chordoma because I'd be dead by now,LOL, but to realize that lumps in those 2 areas can cause symptoms identical to mine gives me hope that this will lead to a DX finally. Baughmann wants me on Remacade, but I won't be able to get it without a " proper " dx. To say I'm frustrated doesn't cover it. I'm getting

desperate. 9 years. I may lose my house. I've already lost my marriage. My baby girl is in college. Life keeps moving along and I'm to sick too keep up. The good news is I have hope. There is so much I want to do! So please pray or burn sage or light a candle or just think of me please - hoping that this new development will be the key to a diagnosis and more importantly treatment. So great to be back here. Love to all of you!

Sandy>> > Wow, Sandy, that's something I've never heard of. Would you see an orthopedist or neurosurgeon to check this out? Did your research say what the treatment would be? Good luck with the testing & follow up.

> > > Ramblin' Rose>

Moderator> > A merry heart is good medicine. Proverbs 17:22> > > > > > > > To: Neurosarcoidosis@ yahoogroups. com

> > > Date: Mon, 17 May 2010 09:33:58 +0000> > Subject: Long lost friend...> > > > Dear friends, > > > > I'm not sure if anyone is here who will remember me. I was very active in the group several years ago and it (you) saved my sanity. Long story short, I have been disabled due to some mysterious illness for almost 9 years. I felt certain that its neurosarc from the beginning. The symptoms match, sarc is in my family, Dr. Baughman in Cincinnati thinks its a good possibility, I even got Bells Palsy last year!! But because of no definitive

markers I can't get a proper diagnosis or proper treatment. I've lost almost a decade of my life and I find I'm able to do less every year. I doing some new tests soon, but I've learned not to expect anything.

> > > > Now something new has developed - a hard lump on my tail bone. It's not a cyst, it doesn't move and it doesn't hurt, but its to the point that I'm uncomfortable lying on my back and sometimes sitting down. It's as if my bone has become misshapen. It's happened slowly. i started noticing it about 3 years ago, but I've never mentioned it to a doctor - I've been made to feel crazy too many times. So get this - I look up the symptom online and it points to something called chordoma. The most common sites for this illness are the tailbone and the base of the skull. Those are the two areas of the spine I have trouble with - lots of headaches and stiffness in the neck, and the growth on the tailbone. And if those two places

are affected,symptoms are almost identical to NS - even facial palsy is mentioned.> > > > So that's where I am. I've been meaning to stop by here for months now. I know I'll find support and kindness here and I promise to give it as well.

> > > > All the best - > > Sandy> > > > p.s. It's 5:30am - I hope this makes sense! LOL> > > > > > > > ------------ --------- --------- ------

> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis Community> > > > > > > > Message Archives:-> > http://groups. yahoo.com/ group/Neurosarco idosis/messages

> > > > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups. yahoo.com/ group/Neurosarco idosis/database

> > > >

May 25, 2010

My heart is working at 50% overall, and my lungs are at 46%--- and since the sarc is showing up in my liver, spleen, kidneys, muscles and more-- the transplant would very likely be effected by sarc- no one knows how soon.

Right now, they don't believe I'd survive surgery- yet alone a transplants-- I'd need heart and lungs.

I'm also a rare blood type-- so that makes it even a longer shot.

Oh well, I have today-- and I'm grateful.

Love ya, and yes, I will share what I"m doing soon.

T

To: Neurosarcoidosis Sent: Tue, May 25, 2010 10:49:41 AMSubject: Re: Re: Long lost friend...

Tracie, Are you not a surgical candidate for the heart? I would like to hear more about your new Whole food supplement, when your ready to explain, I really want to lose weight, and that is awesome that you lost 16 lbs. But I find exercise puts me into a pain cycle, I exercise, which means like 10-20 mins on the treadmill level 1-2, then hurt for the next 2-3 days, so when I feel better, exercise is the last thing I want to do again. So are you starting to feel better? I have been praying for you, and hope that you get some relief. Marla

On Tue, May 25, 2010 at 12:30 AM, tracie feldhaus <tiodaat2001@ yahoo.com> wrote: