Re: Hi, I'm New to the Group

[Guest guest]

Hi

Diane,

And welcome,

we all have long stories to tell to, so don’t worry about that. You

have found the right place, I am sorry to say, only because I am sorry you have

this nasty disease, but here is a great fun, loving family of Sarcoid. I’m

sure you will feel welcomed. I am 48 y.o. and was dx in 1994, cervical

lymph node. They too thought it was lymphoma, and told me how lucky I was

to have Sarcoid instead lol.

I’m

unsure of where all it is, I have neuro, I take methotrexate and

Plaquanil, and was blessed to have a spiritual healing, and was able to come of

some medications, and have more energy then before and less pain. I still

have some symptoms, but not complaining as I am defiantly better then

before.

Welcome and

feel free to jump in anytime.

SmilesJ

Marlr

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On

Behalf Of Diane Aja

Sent: Saturday, June 17, 2006

12:47 PM

To:

Neurosarcoidosis

Subject: Hi,

I'm New to the Group

Hi Everyone,

I'm new to the group, but not new to this

disease. First off, I apologize for such a lengthy letter.

I've been looking for others to talk with that have sarcoidosis and hopefully

this is the place! My name is Diane Aja (aha). I'm 44 years

old and live in Flower Mound, TX. I was officially diagnosed with sarcoid

in 10/03, but now realize I probably had it as far back as the end of 1997

when hearing loss started. In May of 2000 I was diagnosed with

Transverse Myelitis (lesion in my C-spine which they now are saying was the

sarcoid. I found a hard lymph node in my neck and had lost 30 pounds

over 5 months without trying in September of 2003. I was overweight and

can't lose a pound on a diet. They removed the node in 10/03. Before

removal, they did CT scans of entire lymph node system. They told me they

were 99% sure I had lymphoma. Biopsy proved to be sarcoidosis. I

was put on a course of prednisone until 12/03. By 12/03 I had many more

tests on other organs and only showed very tiny granulomas in lungs with

no problems. The prednisone never helped at all and my lymph nodes

are still to this day huge. I continued to be monitored by my regular Dr.

during the next year of so and other than a general feeling of tiredness (I'm

always slightly anemic and can't tolerate iron), my normal back pain from

herniated discs and stuff, I was o.k. Or so I thought. I started

getting really nauseous everyday and then 24/7. I couldn't stand it

anymore and started losing weight again. My doc decided to have my

gallbladder checked and bingo, it needed to come out. It wasn't

working anymore. So 11/05 it came out. During surgery they

discovered that my liver and spleen were filled with sarc. They actually

gave me a color photo of my liver because they had never seen anything like it

before. It's really cool! It looks like it has white polka dots all

over the outside of it. Whenever I get new docs, they ask to see that

photo and some of my latest MRI because they have never seen some of these

things before. After the gallbladder came out I felt MUCH better

for a little while. They've discovered some kind of nodule on my

thyroid. The only way to prove it's sarcoid is to do a biopsy. Not

ready for that one yet. If I have trouble there, I will. Not till

then. I've been having the most horrific pain attacks just below my

breastbone and it radiates from side to side and it just crushes me and makes

it hard for me to breath when it happens. The pain is worse than childbirth

(and I had twins naturally). We don't know yet what's causing it but it

may be neuropathy pain, because we have just found out that the sarcoid is now

all over in my vertebra, pelvic bone and most likely the rest of my bones and

joints. I've been having neuropathy pain from my knees down to my feet

(both sides) for about 3 week now and it's very BAD today. I have

nerve damage pain in my right arm and hand from the old lesion that was in my

C-spine, so I definitely know nerve pain when I have it. I take Topamax everyday

for the old pain. The new must be pretty bad if I can still feel it being

while taking Topamax. I am having a bone marrow biopsy from my pelvic

bone to make sure that it is 100% sarcoid in my spine and not cancer or

something else before they start me on Remicade for the sarc. I am

having my heart checked again on the 22nd of this month. I'm almost

afraid to do it. I've had so much pain in that general area lately I

don't know if I want to know or not. My spleen is enlarging and

anemia is getting worse and in the past two days I'm having shooting pain from

my spleen area to my left shoulder. If any of you have

spleen involvement, you might know that this is NOT good news

for me. My protein level just keeps going up which also means

there is lots of inflammation activity going on all over. Is there no end

to this monster? ha-ha

As of today, here are the places that the sarc monster has

taken over in my body (that I know of): lymph nodes, lungs, liver,

spleen, salivary glands, vertebra/bones, joints, thyroid (probably), spinal

cord, substantial bi-lateral hearing loss. I may have forgotten something

since I don't have my list handy! I battle with non-stop fatigue

and back pain, and with the added new neuropathy pain of my legs and feet.

I would love to hear from anyone who has this much active

involvement that just doesn't seem to want to quit. And is there anyone

out there on Remicade and how often do you get an infusion? They are not

even going to bother with Methaltrexate (sp?) because they say it just isn't

strong enough for my involvement. I have United Health Care PPO insurance

and have been told they may not even cover the Remicade since I have Sarc and

not arthritis! Can you believe that? When you have insurance it

doesn't even pay! If that's the case, I can't even get it then.

Sorry for rambling! I am so thrilled to talk to people

like me that I just can't stop typing. It's like a miracle to have found

a group who I hope to make friends with. I wish you a good day. I

am a lemonade out of lemons kind of person even though it may not sound like it

by this letter!

Your new Sarc Friend,

Diane in TX

[Guest guest]

Hi

Diane,

And welcome,

we all have long stories to tell to, so don’t worry about that. You

have found the right place, I am sorry to say, only because I am sorry you have

this nasty disease, but here is a great fun, loving family of Sarcoid. I’m

sure you will feel welcomed. I am 48 y.o. and was dx in 1994, cervical

lymph node. They too thought it was lymphoma, and told me how lucky I was

to have Sarcoid instead lol.

I’m

unsure of where all it is, I have neuro, I take methotrexate and

Plaquanil, and was blessed to have a spiritual healing, and was able to come of

some medications, and have more energy then before and less pain. I still

have some symptoms, but not complaining as I am defiantly better then

before.

Welcome and

feel free to jump in anytime.

SmilesJ

Marlr

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On

Behalf Of Diane Aja

Sent: Saturday, June 17, 2006

12:47 PM

To:

Neurosarcoidosis

Subject: Hi,

I'm New to the Group

Hi Everyone,

I'm new to the group, but not new to this

disease. First off, I apologize for such a lengthy letter.

I've been looking for others to talk with that have sarcoidosis and hopefully

this is the place! My name is Diane Aja (aha). I'm 44 years

old and live in Flower Mound, TX. I was officially diagnosed with sarcoid

in 10/03, but now realize I probably had it as far back as the end of 1997

when hearing loss started. In May of 2000 I was diagnosed with

Transverse Myelitis (lesion in my C-spine which they now are saying was the

sarcoid. I found a hard lymph node in my neck and had lost 30 pounds

over 5 months without trying in September of 2003. I was overweight and

can't lose a pound on a diet. They removed the node in 10/03. Before

removal, they did CT scans of entire lymph node system. They told me they

were 99% sure I had lymphoma. Biopsy proved to be sarcoidosis. I

was put on a course of prednisone until 12/03. By 12/03 I had many more

tests on other organs and only showed very tiny granulomas in lungs with

no problems. The prednisone never helped at all and my lymph nodes

are still to this day huge. I continued to be monitored by my regular Dr.

during the next year of so and other than a general feeling of tiredness (I'm

always slightly anemic and can't tolerate iron), my normal back pain from

herniated discs and stuff, I was o.k. Or so I thought. I started

getting really nauseous everyday and then 24/7. I couldn't stand it

anymore and started losing weight again. My doc decided to have my

gallbladder checked and bingo, it needed to come out. It wasn't

working anymore. So 11/05 it came out. During surgery they

discovered that my liver and spleen were filled with sarc. They actually

gave me a color photo of my liver because they had never seen anything like it

before. It's really cool! It looks like it has white polka dots all

over the outside of it. Whenever I get new docs, they ask to see that

photo and some of my latest MRI because they have never seen some of these

things before. After the gallbladder came out I felt MUCH better

for a little while. They've discovered some kind of nodule on my

thyroid. The only way to prove it's sarcoid is to do a biopsy. Not

ready for that one yet. If I have trouble there, I will. Not till

then. I've been having the most horrific pain attacks just below my

breastbone and it radiates from side to side and it just crushes me and makes

it hard for me to breath when it happens. The pain is worse than childbirth

(and I had twins naturally). We don't know yet what's causing it but it

may be neuropathy pain, because we have just found out that the sarcoid is now

all over in my vertebra, pelvic bone and most likely the rest of my bones and

joints. I've been having neuropathy pain from my knees down to my feet

(both sides) for about 3 week now and it's very BAD today. I have

nerve damage pain in my right arm and hand from the old lesion that was in my

C-spine, so I definitely know nerve pain when I have it. I take Topamax everyday

for the old pain. The new must be pretty bad if I can still feel it being

while taking Topamax. I am having a bone marrow biopsy from my pelvic

bone to make sure that it is 100% sarcoid in my spine and not cancer or

something else before they start me on Remicade for the sarc. I am

having my heart checked again on the 22nd of this month. I'm almost

afraid to do it. I've had so much pain in that general area lately I

don't know if I want to know or not. My spleen is enlarging and

anemia is getting worse and in the past two days I'm having shooting pain from

my spleen area to my left shoulder. If any of you have

spleen involvement, you might know that this is NOT good news

for me. My protein level just keeps going up which also means

there is lots of inflammation activity going on all over. Is there no end

to this monster? ha-ha

As of today, here are the places that the sarc monster has

taken over in my body (that I know of): lymph nodes, lungs, liver,

spleen, salivary glands, vertebra/bones, joints, thyroid (probably), spinal

cord, substantial bi-lateral hearing loss. I may have forgotten something

since I don't have my list handy! I battle with non-stop fatigue

and back pain, and with the added new neuropathy pain of my legs and feet.

I would love to hear from anyone who has this much active

involvement that just doesn't seem to want to quit. And is there anyone

out there on Remicade and how often do you get an infusion? They are not

even going to bother with Methaltrexate (sp?) because they say it just isn't

strong enough for my involvement. I have United Health Care PPO insurance

and have been told they may not even cover the Remicade since I have Sarc and

not arthritis! Can you believe that? When you have insurance it

doesn't even pay! If that's the case, I can't even get it then.

Sorry for rambling! I am so thrilled to talk to people

like me that I just can't stop typing. It's like a miracle to have found

a group who I hope to make friends with. I wish you a good day. I

am a lemonade out of lemons kind of person even though it may not sound like it

by this letter!

Your new Sarc Friend,

Diane in TX

[Guest guest]

Hi

Diane,

And welcome,

we all have long stories to tell to, so don’t worry about that. You

have found the right place, I am sorry to say, only because I am sorry you have

this nasty disease, but here is a great fun, loving family of Sarcoid. I’m

sure you will feel welcomed. I am 48 y.o. and was dx in 1994, cervical

lymph node. They too thought it was lymphoma, and told me how lucky I was

to have Sarcoid instead lol.

I’m

unsure of where all it is, I have neuro, I take methotrexate and

Plaquanil, and was blessed to have a spiritual healing, and was able to come of

some medications, and have more energy then before and less pain. I still

have some symptoms, but not complaining as I am defiantly better then

before.

Welcome and

feel free to jump in anytime.

SmilesJ

Marlr

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On

Behalf Of Diane Aja

Sent: Saturday, June 17, 2006

12:47 PM

To:

Neurosarcoidosis

Subject: Hi,

I'm New to the Group

Hi Everyone,

I'm new to the group, but not new to this

disease. First off, I apologize for such a lengthy letter.

I've been looking for others to talk with that have sarcoidosis and hopefully

this is the place! My name is Diane Aja (aha). I'm 44 years

old and live in Flower Mound, TX. I was officially diagnosed with sarcoid

in 10/03, but now realize I probably had it as far back as the end of 1997

when hearing loss started. In May of 2000 I was diagnosed with

Transverse Myelitis (lesion in my C-spine which they now are saying was the

sarcoid. I found a hard lymph node in my neck and had lost 30 pounds

over 5 months without trying in September of 2003. I was overweight and

can't lose a pound on a diet. They removed the node in 10/03. Before

removal, they did CT scans of entire lymph node system. They told me they

were 99% sure I had lymphoma. Biopsy proved to be sarcoidosis. I

was put on a course of prednisone until 12/03. By 12/03 I had many more

tests on other organs and only showed very tiny granulomas in lungs with

no problems. The prednisone never helped at all and my lymph nodes

are still to this day huge. I continued to be monitored by my regular Dr.

during the next year of so and other than a general feeling of tiredness (I'm

always slightly anemic and can't tolerate iron), my normal back pain from

herniated discs and stuff, I was o.k. Or so I thought. I started

getting really nauseous everyday and then 24/7. I couldn't stand it

anymore and started losing weight again. My doc decided to have my

gallbladder checked and bingo, it needed to come out. It wasn't

working anymore. So 11/05 it came out. During surgery they

discovered that my liver and spleen were filled with sarc. They actually

gave me a color photo of my liver because they had never seen anything like it

before. It's really cool! It looks like it has white polka dots all

over the outside of it. Whenever I get new docs, they ask to see that

photo and some of my latest MRI because they have never seen some of these

things before. After the gallbladder came out I felt MUCH better

for a little while. They've discovered some kind of nodule on my

thyroid. The only way to prove it's sarcoid is to do a biopsy. Not

ready for that one yet. If I have trouble there, I will. Not till

then. I've been having the most horrific pain attacks just below my

breastbone and it radiates from side to side and it just crushes me and makes

it hard for me to breath when it happens. The pain is worse than childbirth

(and I had twins naturally). We don't know yet what's causing it but it

may be neuropathy pain, because we have just found out that the sarcoid is now

all over in my vertebra, pelvic bone and most likely the rest of my bones and

joints. I've been having neuropathy pain from my knees down to my feet

(both sides) for about 3 week now and it's very BAD today. I have

nerve damage pain in my right arm and hand from the old lesion that was in my

C-spine, so I definitely know nerve pain when I have it. I take Topamax everyday

for the old pain. The new must be pretty bad if I can still feel it being

while taking Topamax. I am having a bone marrow biopsy from my pelvic

bone to make sure that it is 100% sarcoid in my spine and not cancer or

something else before they start me on Remicade for the sarc. I am

having my heart checked again on the 22nd of this month. I'm almost

afraid to do it. I've had so much pain in that general area lately I

don't know if I want to know or not. My spleen is enlarging and

anemia is getting worse and in the past two days I'm having shooting pain from

my spleen area to my left shoulder. If any of you have

spleen involvement, you might know that this is NOT good news

for me. My protein level just keeps going up which also means

there is lots of inflammation activity going on all over. Is there no end

to this monster? ha-ha

As of today, here are the places that the sarc monster has

taken over in my body (that I know of): lymph nodes, lungs, liver,

spleen, salivary glands, vertebra/bones, joints, thyroid (probably), spinal

cord, substantial bi-lateral hearing loss. I may have forgotten something

since I don't have my list handy! I battle with non-stop fatigue

and back pain, and with the added new neuropathy pain of my legs and feet.

I would love to hear from anyone who has this much active

involvement that just doesn't seem to want to quit. And is there anyone

out there on Remicade and how often do you get an infusion? They are not

even going to bother with Methaltrexate (sp?) because they say it just isn't

strong enough for my involvement. I have United Health Care PPO insurance

and have been told they may not even cover the Remicade since I have Sarc and

not arthritis! Can you believe that? When you have insurance it

doesn't even pay! If that's the case, I can't even get it then.

Sorry for rambling! I am so thrilled to talk to people

like me that I just can't stop typing. It's like a miracle to have found

a group who I hope to make friends with. I wish you a good day. I

am a lemonade out of lemons kind of person even though it may not sound like it

by this letter!

Your new Sarc Friend,

Diane in TX

[Guest guest]

,

Welcome to the family-- wish you weren't here as "one of us." Heck, I wish none of us were here-- that'd mean we are all weller.

Anyway-- like you-- I have had sarcoidosis for 17 yrs now. It started in my eyes and lungs, and with the rash on my legs. After years of high dose pred, and a couple of years of "remission"-- it came back about 7 yrs ago-- fully systemic and neurological. It is in my liver, eyes, brain, nerves, muscles ligaments, lungs, lymphs, joints and bones.

Fortunately, I was able to get the Remicade paid for-- and I do have UHC also. (It's now secondary to my Medicare). The Rheumi and the Pulmonologist wrote a letter that stated either get me on the Remicade, or put me on the lung or heart/lung transplant list.

Your MD needs to state that you have severe, progressive, multisystem sarcoidosis. And that all the other drugs are not going to act as quickly or effeciently as Remicade. You need also to be on the Methotrexate along with the Remicade--so that you don't build anti-bodies to the Remicade. Remicade is developed to work in conjunction with MTX-- so you'll need both. Get the MD to start the MTX-- and fight to get the Remicade covered.

I started it a bit over a year ago-- and was part of the clinical trial in LA for Remicade. I did get the drug-- and have been able to get off my oxygen-- I use it only at night now. Also, the systemic bone and muscle, ligament pain has lessened tremendously! I've actually been able to get back into a pulm rehab program where I am spending 15 min on a treadmill and 12 min on a stationary bike-- and will work up from there-- 3x a week!

I get the infusions every 4 weeks, at 5mg/kg dose. They start you at 1 infusion, 2wks later a 2nd, 4wks later a 3rd, and then out to 8 wks. They'll have to back it up to the week distance that works for you.

Hope this helps,

Tracie

NS Co-owner/moderator

[Guest guest]

Tracie,

Thank you so much. You don't know how much this helps me! I'm sorry also that you have to be the ones to help me, but you know what I mean :-) Now I have so much more information on Remicade and Methaltrexate than I ever have. I feel armed and ready to go to my Rheumatologist with questions! In fact I'll print this out and take it with me so they know that I'm doing my homework. They should know this already through my regular doc who is married to one of the fellowship Rheumatologists. She knows I use the internet to find out about everything I can. I know a lot of docs don't like it when they feel I know more than they do about Sarc! Anyway, thanks so much for now. At least I know kind of what to expect and if they don't do what you're saying they should do, I'll question them.

Hugs from TX,

Diane

Re: Hi, I'm New to the Group

,Welcome to the family-- wish you weren't here as "one of us." Heck, I wish none of us were here-- that'd mean we are all weller.Anyway-- like you-- I have had sarcoidosis for 17 yrs now. It started in my eyes and lungs, and with the rash on my legs. After years of high dose pred, and a couple of years of "remission"-- it came back about 7 yrs ago-- fully systemic and neurological. It is in my liver, eyes, brain, nerves, muscles ligaments, lungs, lymphs, joints and bones.Fortunately, I was able to get the Remicade paid for-- and I do have UHC also. (It's now secondary to my Medicare). The Rheumi and the Pulmonologist wrote a letter that stated either get me on the Remicade, or put me on the lung or heart/lung transplant list.Your MD needs to state that you have severe, progressive, multisystem sarcoidosis. And that all the other drugs are not going to act as quickly or effeciently as Remicade. You need also to be on the Methotrexate along with the Remicade--so that you don't build anti-bodies to the Remicade. Remicade is developed to work in conjunction with MTX-- so you'll need both. Get the MD to start the MTX-- and fight to get the Remicade covered.I started it a bit over a year ago-- and was part of the clinical trial in LA for Remicade. I did get the drug-- and have been able to get off my oxygen-- I use it only at night now. Also, the systemic bone and muscle, ligament pain has lessened tremendously! I've actually been able to get back into a pulm rehab program where I am spending 15 min on a treadmill and 12 min on a stationary bike-- and will work up from there-- 3x a week! I get the infusions every 4 weeks, at 5mg/kg dose. They start you at 1 infusion, 2wks later a 2nd, 4wks later a 3rd, and then out to 8 wks. They'll have to back it up to the week distance that works for you.Hope this helps,TracieNS Co-owner/moderator