Re: Sarcoidosis/Marti

January 3, 2008

Hi Jeanne,

Sarcoidosis is an inflammatory disease that generally starts in the lungs and

can affect any organ in your body, including liver, skin, heart, nervous system

and eyes, It's an autoimmune disease.It produces tiny lumps of cells called

granulomas that group together in your organs. It can be, and is in me, a

progressive disease that can lead to pulmonary fibrosis (dead lungs) which is

fatal. It can also destroy any of the other organs it is found in. The first

place it was dx in me was in my eyes. I was losing my vision and seeing through

a fog I went to an ophthalmologist who sent me to an eye specialist. He did a

biopsy in both eyes, had me do some blood tests and have a CT Scan. The biopsy

and everything else came back as Sarcoid. They found it in my lungs and several

other organs, including my muscles and my sinuses, with the CT Scan. It caused

an abscess in my sinuses where the infection has been healed but the hole still

remains in the bone. Don't know what

they are going to do about that yet.

It can also cause blindness and right now that is what is the most dangerous

thing for me. It had progressed considerably before I went to the eye doctor.(I

had told my PCP many times that my eyes hurt and he never even looked in them or

gave me a referral to an eye doctor. Just said it was probably due to sinus

problems. He also said I didn't need an antibiotic when I told him I was sure I

had a sinus infection. He said it was a virus and I couldn't even get him to

culture it to find out. I went three times to try to get help with my sinuses.

That was last December (06) and I started going to a new PCP last June. He

ordered the scan that showed the abscess in my sinuses and I was on antibiotics

for 8 weeks trying to clear it up and ended up with a hole in the bone around my

sinus.) I have had steroid shots in both eyes twice, fun, and take Prednisone

to slow the inflammation all over my body, but mainly right now in my eyes.

After weaning from the pred I'm

supposed to start on Methotrexate, which is a cancer drug in high doses, but

works on sarcoid in lower doses. I know people through a sarcoid support group

who are on oxygen 24/7 and are confined to beds or wheel chairs. Also two who

have gone blind. I don't plan to have that happen to me.

Also around this time I had a bone marrow biopsy because of a PET Scan showing

bone lymphoma and that came back positive, so I have that to contend with also.

It is a different type of pain, so I get to have both types of pain at the same

time. I will start a treatment for the bone cancer this month. They don't have

a prognosis they will tell me right now.

I told you way more than you wanted to know I'm sure.

Take care and thanks for asking,

Marti

Dave and Jeanne wrote:

I read that this is a disease of the lungs that can often go along

with FM. I thought you posted that you have it in your eyes, so I'm confused.

Could you explain? Or maybe one of are crack researchers will post a link and

I'll read up on it. I'm 180 posts behind at the moment, so I'm not taking the

time to google it myself. LOL! I hope your bronchitis gets better soon.

Jeanne in WI

January 3, 2008

Oh gosh, I guess you explained some of this before and I just couldn't

remember. So now I'm not confused anymore. But I sure do feel sorry for

all you are having to endure. Stupid doctors!!! Why can't they just listen

and know that we might just know something about our own bodies more than

they do? I would think that the sarcoidosis is probably making it much more

difficult to get over the bronchitis. I'll keep praying.

Jeanne in WI

> Hi Jeanne,

> Sarcoidosis is an inflammatory disease that generally starts in the lungs

> and can affect any organ in your body, including liver, skin, heart,

> nervous system and eyes, It's an autoimmune disease.It produces tiny

> lumps of cells called granulomas that group together in your organs. It

> can be, and is in me, a progressive disease that can lead to pulmonary

> fibrosis (dead lungs) which is fatal. It can also destroy any of the

> other organs it is found in. The first place it was dx in me was in my

> eyes. I was losing my vision and seeing through a fog I went to an

> ophthalmologist who sent me to an eye specialist. He did a biopsy in both

> eyes, had me do some blood tests and have a CT Scan. The biopsy and

> everything else came back as Sarcoid. They found it in my lungs and

> several other organs, including my muscles and my sinuses, with the CT

> Scan. It caused an abscess in my sinuses where the infection has been

> healed but the hole still remains in the bone. Don't know what they are

> going to do about that yet. It can also cause blindness and right now that

> is what is the most dangerous thing for me. It had progressed

> considerably before I went to the eye doctor.(I had told my PCP many times

> that my eyes hurt and he never even looked in them or gave me a referral

> to an eye doctor. Just said it was probably due to sinus problems. He

> also said I didn't need an antibiotic when I told him I was sure I had a

> sinus infection. He said it was a virus and I couldn't even get him to

> culture it to find out. I went three times to try to get help with my

> sinuses. That was last December (06) and I started going to a new PCP

> last June. He ordered the scan that showed the abscess in my sinuses and

> I was on antibiotics for 8 weeks trying to clear it up and ended up with a

> hole in the bone around my sinus.) I have had steroid shots in both eyes

> twice, fun, and take Prednisone to slow the inflammation all over my body,

> but mainly right now in my eyes. After weaning from the pred I'm

> supposed to start on Methotrexate, which is a cancer drug in high doses,

> but works on sarcoid in lower doses. I know people through a sarcoid

> support group who are on oxygen 24/7 and are confined to beds or wheel

> chairs. Also two who have gone blind. I don't plan to have that happen

> to me.

> Also around this time I had a bone marrow biopsy because of a PET Scan

> showing bone lymphoma and that came back positive, so I have that to

> contend with also. It is a different type of pain, so I get to have both

> types of pain at the same time. I will start a treatment for the bone

> cancer this month. They don't have a prognosis they will tell me right

> now.

> I told you way more than you wanted to know I'm sure.

> Take care and thanks for asking,

> Marti

January 3, 2008

Thank you Jeanne. It means a lot to me.