New to this Sarcoid Trip

[Mary_Utah]

I was finally diagnosed with Sarcoidosis is January of this year. I
have struggled with may muscular problems problems for about the last
4 or 5 years. I'm sure it's all related to this lovely disease.

On July2, 2010 I notice a blind spot in my right eye and was
immediately rused to the emergency room for lots of tests for my
brain. The MRI showed nothing on my brain but the first blood test
showed signs of Sarc and of course the only doctor who believed it was
Sarc was the Opthamalogist. He has been my best doctor. Massive
doses of steriods were give 80 mg to bring down the unknown
inflammation.

I was referred to IMC Lung and Heart center by my eye doctor because
he notice a chronic cough I had had since Feb. Acutally, I had this
cough on and off for the last few years and recently I had been
gasping for air. I guess I should have known it was more than just
allegies or asthma, but I didn't. The Pulmonolgist said my tests came
back a little abnormal and was not concerned. He said I needed to be
off steoids to really test for Sarc.

My eye doctor cut me back to 40 mg and I started feeling more
miserable. I felt like a hugh water balloon and everytime I got up, I
almost passed out. My Primary Care thought I might be have TIA's, so
off to more tests I went. I as in lots of pain and at times was very
depressed. You have to understand that I am not a depressed person.
This was new to me.

After MRI, a Spinal Tap and a multitude of several blood tests. .
Finally my vision was getting better so I was weaned off sterios off
to do a lung biopsy. As soon as I was off, my cough returned. They
did a high resolution CAT scan and said all my lymph nodes were
enlarged and there was more going on in my lungs. The biopsy proved
Sarc.

I'm not real fond of my pulmonologist because he seems to think this
Sarc is just going to fade away. I can't sleep, have extreme pain and
inflammation. Still have major problems with eyes. I have high
pressure in both now and have to use glacoma drops. Now I have a
lovely Sarc breakout on my face. Went to a crappy dermatologist just
to get in and get treatment. I was going to have to wait 2 months.
Maybe it would have been worth the wait, because the treatment isn't
working.

I am so frustrated with the doctors, except my eye doctor who seems to
be the ony one who cares. I am going to see him today for followup
and I am going to ask him if he can order a gallium or pet scan. I
want to find out where the Sarc is in my body that is causing all this
inflammation. I can't function normal anymore. I lost my great job
in Feb. due to this illness. I have always been an outstanding worker
but I could not perform well under these health issues.

My pulomologist sucks. Do any of you have a good doctor who really
knows what they are doing and can help?

Frustrated,
Mary_Utah

[Lizi]

Dear Mary:

Thank you for sharing your story with us. As I am sure all in the
group would agree, Sarc is very different for all of us, but for most
of us, it has been a bumpy road filled with good days and bad days.
Since there are very few physicians who are really "specialists" in
sarcoidosis, it takes a lot of looking to find doctors that really
"get it." It is very frustrating at times because it feels like no
one understands. My physician, Tracy Frech, is a rheumatologist at
the University of Utah. I love her. She is wonderful! She is,
however, very quick to defer to specialists such as my pulmonologists,
neurologists, etc. All of my physicians are at the University of
Utah. I have found that they work together as a team to give me the
best care possible. I am still very frustrated at times because I
still have bad days filled with pain. I also have good days and I have
learned to make the most of those. On the bad days, I rest. I try
and listen to my body and not overdo on the good days, because I know
I will pay the next day. It is very difficult to accept a change in
your life that you didn't expect, but it can make you stronger.

We are here for you Mary! Let me know if there is anything I can do.
I would be happy to talk with you on the phone anytime. Just email me
directly at lizita...@msn.com and I will give you my number.

Here's hoping you have a great day, pain-free day!

Lizi