Long lost friend...

May 17, 2010

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

May 17, 2010

Hi Sandy, My memory has been effected with this crazy disease, I've been around awhile, and I'm sure you were here then. Anyway, it's good to see you posting again. are you sure that the lump on your tailbone is Chordoma, from what I've read that is a type of bone cancer, I think would require surgery??? Have you had it biopsied?? that should help tell you what it is.

I have lumps and bumps all over my body, in my spine and base of my skull to, but there very very small, but do a lot of damage. I've had some of my lumps biopsied, and they come back as granulomas, which is common with Sarcoid.

I know it's frustrating, I'm on several medications and it's barely holding the disease process back. Every day is a new day for sure. The drug that has helped me the most so far is Remicade, I get it every 5 weeks, it's about a 3 hour infusion, but it has truly been my friend, this is not so with everyone. I'm sure you will hear from others too.

Glad to have you back. Marla

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

May 17, 2010

Sandy,

This may be just osteoarthritis-- it's not comfortable, but anti-inflammatories can help. As Marla said, get in and get it checked out.

If I remember right, you were part of the early group with Shar and Aisha and all. A lot of years have gone by and now with more than 600+ members-- to say we've grown up is an under statement.

Anyway, we welcome you back and I'm sure that you'll find that thaere are still a lot of loving hearts to help you with this journey.

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Mon, May 17, 2010 3:59:40 PMSubject: Re: Long lost friend...

Hi Sandy, My memory has been effected with this crazy disease, I've been around awhile, and I'm sure you were here then. Anyway, it's good to see you posting again. are you sure that the lump on your tailbone is Chordoma, from what I've read that is a type of bone cancer, I think would require surgery??? Have you had it biopsied?? that should help tell you what it is. I have lumps and bumps all over my body, in my spine and base of my skull to, but there very very small, but do a lot of damage. I've had some of my lumps biopsied, and they come back as granulomas, which is common with Sarcoid. I know it's frustrating, I'm on several medications and it's barely holding the disease process back. Every day is a new day for sure. The drug that has helped me the most so far is Remicade, I get it every 5 weeks, it's about a 3 hour infusion, but it has truly been my friend, this is not

so with everyone. I'm sure you will hear from others too. Glad to have you back. Marla

On Mon, May 17, 2010 at 3:33, <savnsan (AT) yahoo (DOT) com> wrote:

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 - Sandyp.s. It's 5:30am - I hope this makes sense! LOL

May 17, 2010

Sandy,

I'm a Chiropractic Orthopedist, I have been in practice for over 20 years and I think I'm the most qualified to give you advice on this "bump" on your Coccyx.

My advice is simple, STOP THINKING ABOUT IT RIGHT THIS SECOND. I can write and tell you ten things it might be that are good and the same for what is bad. The only thing your doing right now is driving yourself insane. The people on this board are wonderful, they gave me the most incredible gift I could have received after the last 9 years-that I'm not alone and not crazy.

But with something like this your going to get 100 different possibilities and you won't hear or believe any of them that are good, you'll just dwell on the one's that are bad.

This is whole situation is simple, go to you Doc and let him order a simple x-ray. In 24 hours you'll have a good idea of what it is or isn't and chances are it isn't anything serious but if it is you'll know for sure without any speculations from 100 caring people who do a lot of reading. Problem is when you read, you read mostly about the bad stuff because "Increased Calcification of the Coccyx" is boring.

If you live in Pa or NY and don't want to go to the Doctor because your afraid let me know and I'll write you the script for the x-ray.

Either way this time tomorrow there's a good chance you can have an answer.

Please take something to calm down, stop reading and get a picture taken tomorrow, please.

I'm here if you need me. If you need me to call just send me your phone number and I'll give you a buzz. mjcv29a@....

My philosophy is "It's nothing until they prove us wrong" so for right now it's NOTHING.

Yours in Health,

Mitch

Re: Long lost friend...

Hi Sandy,

My memory has been effected with this crazy disease, I've been around awhile, and I'm sure you were here then. Anyway, it's good to see you posting again. are you sure that the lump on your tailbone is Chordoma, from what I've read that is a type of bone cancer, I think would require surgery??? Have you had it biopsied?? that should help tell you what it is.

I have lumps and bumps all over my body, in my spine and base of my skull to, but there very very small, but do a lot of damage. I've had some of my lumps biopsied, and they come back as granulomas, which is common with Sarcoid.

I know it's frustrating, I'm on several medications and it's barely holding the disease process back. Every day is a new day for sure. The drug that has helped me the most so far is Remicade, I get it every 5 weeks, it's about a 3 hour infusion, but it has truly been my friend, this is not so with everyone. I'm sure you will hear from others too.

Glad to have you back.

Marla

On Mon, May 17, 2010 at 3:33, <savnsan (AT) yahoo (DOT) com> wrote:

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

May 17, 2010