Re: I just got the word from my Dr...no RA for me!

[Guest guest]

I don’t know enough about the

differences between RA and sarcoidosis to give congratulations or

sympathy. Neither one sounds very good. I do think I would get a

second opinion just to make sure the correct disease is being treated. I

have no reason to doubt your doctor but I would feel better with independent

confirmation. I hope your treatment goes well, and you are welcome to

stay here even if it is not RA. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of mcsooey

Sent: Friday, January 05, 2007

9:35 AM

Rheumatoid Arthritis

Subject: I

just got the word from my Dr...no RA for me!

Hi RA Gang,

I got the final word from Dr. DiSabitino in New Haven, CT

yesterdeay.

After a full exam, tons of questions, xrays and final blood work he is

sure I do NOT have RA! He sees OA in my hands, lower spine, left hip

and what he thinks is a Sarcoid 'cyst' on my right wrist...but NO RA!

This was very good news but I admit to being a bit dissapointed. I

know, that is a very strange statement to make. But, I have chronic

Sarcoidosis which is what he feels caused a false positive RA Factor

in my blood work back in November. The Sarcoid is in my lungs and is

dong a great deal of damage. Damage that will never go away. The

immuno-suppresents and the Methotrexate are used in the treatment for

both RA and Sarcoid. RA is treated early and aggressivaly to stop

joint damage. Sarcoid is not treated until you really can not live

without it. If there was an up side to having RA it was treating it

could have also helped my lungs.

But...the real UP SIDE is...I don't have RA!!! He gave me a list of

symptoms and issues to watch out for. He was sure to tell me that

even though he is sure my positive RA Factor was a false positive...on

paper, it was still positive. I could be in the very early stages of

RA but he sees no indication other than that first blood test. So,

for now, I am happy.

So, thank you all for being here. I learned a great deal from reading

your posts. It was so good to know that I had a place to come to

where I knew I could find some answers to my many questions. I hope

you are all feeling as well as you are able and that each day brings

new hope and comfort. Thank you all.

Sooey

[Guest guest]

Hi, Harold,

Yes, I agree, both RA and Sarcoidosis are awful. But now, thank

goodness, I only have to worry about one of them. It was my Pulmo

who ordered the blood work in November that showed the positive RA

Factor. He was the one who refered me to DiSabatino for a second

opinion.

I was dx with the sarc back in August of '03. I had no idea I had

it, I had never heard of it. It was discovered during follow-up

xrays after a routine colonoscopy. In the xrays they showed the

bottom lobes of my lungs and, saw some awful junk that is not sapose

to be there. I had a CT scan two days later and the Radiologist told

my GP that what he was seeing was advanced, no hope, lung cancer. It

was my GP who said No...can't be. He asked the Radiologist if it

could be sarcoid...I was robust, healthy in every other way...lung

cancer was not it. The radiologist agreed that if not lung cancer

than it could be sarcoidosis. I had a biopsy, mediastinosopy where

they took out some lymph nodes from my chest and BINGO!

Sarcoidosis...I was very happy. Now, don't get me wrong, sarcoid

really sucks...but it's not cancer.

My Pulmo thinks I've had it for about 10 - 15 years and never knew

it. Which, by the way, is not at all uncommon...to have it and never

know it. My lungs are in very bad shape. I have chest xrays about

twice a year, PFTs twice a year and since '03 I have watched my

oxygen dyfusion rate go from 98% down to 73%. That is one reason

that the possible dx of RA, while not something to wish for or fool

around with, could have been a mixed blessing. What's good for RA

also seems to be good for Sarcoid. As we know, RA is treated early

and agressivly. For Sarcoid, treatment is only done as a very last

resort.

I am not receiving treatment for the Sarcoid. Dr's take a wait and

see approach. 30 % of the people who have sarc never know they have

it. It comes and goes on it's own, leaving only scars to prove it

was there. Another 30% get it, know they have it but it goes away in

about 2 - 3 years. 30% get it, it becomes chronic, with time you

need o2, you become disabled, yada, yada, yada and, the last 10% of

the sarcoid population get it, suffer greatly and die from it.

Sarcoid is one of the illnesses that we are seeing crop up as a

rusult of the events of Sept. 11th. Many of the volunteers at ground

zero are now showing sarcoid. Dr.s have no idea what causes it.

They have very few treatments for it. The two main treatments being

prednisone and methotrexate. The immuno-suppressents are new to

sarcoid. Some times it helps, sometimes it dosen't.

It seems that I, along with all the other folks with chronic sarcoid

will have to wait for the medical tide to turn or, a new discovery or

treatment for the sarc. For now, I'm not bad. I can still get

around, almost like always. I know what I can and can't do. I can

feel it getting worse which is very depressing to me, but I'm much

better off than many and...I don't have RA...For now...I will rejoyce

in that bit of good news...

Thanks, Harold. Be well.

Sooey

>

> I don't know enough about the differences between RA and

sarcoidosis to give

> congratulations or sympathy. Neither one sounds very good. I do

think I

> would get a second opinion just to make sure the correct disease is

being

> treated. I have no reason to doubt your doctor but I would feel

better with

> independent confirmation. I hope your treatment goes well, and you

are

> welcome to stay here even if it is not RA. God bless.

>

>

>

> _____

>

> From: Rheumatoid Arthritis

> [mailto:Rheumatoid Arthritis ] On Behalf Of mcsooey

> Sent: Friday, January 05, 2007 9:35 AM

> Rheumatoid Arthritis

> Subject: I just got the word from my Dr...no

RA for

> me!

>

>

>

> Hi RA Gang,

>

> I got the final word from Dr. DiSabitino in New Haven, CT

yesterdeay.

> After a full exam, tons of questions, xrays and final blood work he

is

> sure I do NOT have RA! He sees OA in my hands, lower spine, left

hip

> and what he thinks is a Sarcoid 'cyst' on my right wrist...but NO

RA!

>

> This was very good news but I admit to being a bit dissapointed. I

> know, that is a very strange statement to make. But, I have chronic

> Sarcoidosis which is what he feels caused a false positive RA

Factor

> in my blood work back in November. The Sarcoid is in my lungs and

is

> dong a great deal of damage. Damage that will never go away. The

> immuno-suppresents and the Methotrexate are used in the treatment

for

> both RA and Sarcoid. RA is treated early and aggressivaly to stop

> joint damage. Sarcoid is not treated until you really can not live

> without it. If there was an up side to having RA it was treating it

> could have also helped my lungs.

>

> But...the real UP SIDE is...I don't have RA!!! He gave me a list of

> symptoms and issues to watch out for. He was sure to tell me that

> even though he is sure my positive RA Factor was a false

positive...on

> paper, it was still positive. I could be in the very early stages

of

> RA but he sees no indication other than that first blood test. So,

> for now, I am happy.

>

> So, thank you all for being here. I learned a great deal from

reading

> your posts. It was so good to know that I had a place to come to

> where I knew I could find some answers to my many questions. I hope

> you are all feeling as well as you are able and that each day

brings

> new hope and comfort. Thank you all.

>

> Sooey

>