Re: Starting symptoms

[Guest guest]

I have had respiratory infections all of my life. As a kid, it was always contributed to seasonal allergies. They loaded me up on antibiotic after antiobiotic--and prednisone and solumedrol 7 day packs-- to little success. At the age of 12, my thyroid became huge-- and was so very hyperactive that I had to be on meds to slow it down. By 18, I had to have it removed, and even tho it's not on the report-- it was full of sarcoid granulomas per the G.P.

I continued to have serious respiratory infections and sinus infections. Sinus sx helped some, but now the antral windows (drop seats for the gunk in my sinuses) have scarred over on one side-- so it is becoming a problem again.

At 24, I had an on the job back injury, tearing all the muscles and ligaments the full length of my spine, and that started a chronic pain journey from hell. I would become dependant on pain meds and muscle relaxants-- to the edge of addiction to them. That is why I am such an advocate of meditation and guided visualization-- because I don't ever want to go back to needing them full time. I do alot of breath work, and have had to learn alternative ways to cope with constant pain.

It was 1990-- at the age of 33, that I was diagnose with sarcoidosis.

I was working for an internal med doc, and I was "joking" that I needed to use the oxygen tank in the office-- and sadly, it was what I needed. The crazy part was-- it was a case of bilateral iritis-- inflammation in the irises of both eyes, that got the tests going to see why. I had worked for an Ophthalmologist previously, and he is the one who diagnosed the problem. Actually, he thought that it was going to be anklyosising spondylytis-- a horrid form of arthritis that destroys the triangular bone at the base of your spine-- leaving you crippled.

He ordered lung xrays, spinal xrays, lab work and more. My ACE levels where at 288-- and normal is below 30. That said serious systemic inflammation. It was the lungs that showed up looking like they were full of ground glass-- that got everyone really excited. the doc I was working for pulled me into his office at the end of my shift-- and told me that I as going in for a bronchoscopy the next morning.

I get home, it wasn't a hour later-- and the local pulmonologist called and introduced himself. He said he didn't want me to panic--but that from the looks of the xray, I needed to be prepared to have surgery to remove the lungs involved if it was cancer. The chances were 80% it was! My son had turned 7 the day prior....

The bronch showed Stage 3 pulm sarc-- so it was on to 100mg of pred, and took 2 1/2 yrs to wean off it. I was still Stage 2 when I got off it-- 60lbs heavier and still not able to breath well. We hoped that my body would take it down more on it's own, but after a 4 yr hiatus from major problems, the sarc came back-- in my eyes and lungs and all the "arthritis" was from the sarcoidosis.

The original pulm had told me if it came back, to not allow them to put me on pred-- but the new yo-yo insisted. It masked the symptoms-- but the sarc was still rampant. We tried Imuran- my liver didn't like it. We tried Arava, my gut couldn't handle it. They put me Plaquenil-- and that helped with some of the problems. Then we added Methotrexate and that helped some of the problems.

I was still developing neuro symptoms-- brain fog, unable to multi task, short-term memory loss, and more. I was sent down to UC in Sacramento and started the testing to rule out all the other possible autoimmune diseases-- and that plus neuropsych testing and the proven lung biopsy confirmed the sarc.

I can't help but wonder if this was something that I was born with-- and I'm sure my mom has it too-- she has always suffered the same way.

Anyway, I was able to find the clinical trial (the doc in UCD was trying to no avail to get me on Remicade) but it was the trial that proved it worked for me. At this point, I'm sure that it is working on some of the stuff, the brain fog is much better as is the body pain-- but it's no longer working on my lungs.

So I'm starting a new chapter and am going to have to get records to the docs at USC-LA-- and see where to go from here.

Time to take a deep breath, and keep on keeping on...

Sincerely

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sun, February 28, 2010 5:18:51 AMSubject: Re: Fw: " Couldn't Resist"

did everyone's sarc start out non symtomatic

Subject: Fw: " Couldn't Resist"To: Neurosarcoidosis Date: Saturday, February 27, 2010, 7:34 PM



I thought you could all use a little laugh. Please excuse it it is a little off beat.

Jackie



The Indian With One Testicle

There once was an Indian who had only one testicle

and whose given name was 'Onestone'. He hated that

name and asked everyone not to call him Onestone..

After years and years of torment, Onestone finally

cracked and said,' If anyone calls me Onestone

again I will kill them!'

The word got around and nobody called

him that any more.

Then one day a young woman named Blue Bird

forgot and said, 'Good morning, Onestone.' He

jumped up, grabbed her and took her deep into

the forest where he made love to her all day and

all night. He made love to her all the next day,

until Blue Bird died from exhaustion.

The word got around that Onestone meant what

he promised he would do. Years went by and no

one dared call him by his given name until A woman

named Yellow Bird returned to the village after being

away. Yellow Bird , who was Blue Bird's cousin, was

overjoyed when she saw Onestone. She hugged him

and said, 'Good to see you, Onestone.'

Onestone grabbed her, took her deep into the forest,

then he made love to her all day, made love to her all

night, made love to her all the next day, made love to

her all the next night, but Yellow Bird wouldn't die!

Why ???

OH, come on... take a guess !!!

Think about it !!!

You're going to love this !!!

Everyone knows...

You can't kill Two Birds

with OneStone!!!

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