I need information

[Guest guest]

I feel crappy—I feel like I have sarcoid in other

organs for weird symptoms I am experiencing. I have only had a CT of

my lungs and my brain. Can someone help understand what other tests I

should request? Or find information Needless to say I have found

another doctor and won't be going back. I am looking for help—any

advise? Is it true that fatigue is not a complaint?????

Janet,

Fatigue is one of the most common "symptoms" that all of us have. It's not "fatigue" in the normal sense, it's total complete exhaustion--all the time.

It does sound like your sarcoidosis has become "systemic" and/or "neurological."

Your lung MD (pulmonologist) is an idiot. He's from the 1953 Merck Manual that says only black women get severe cases of sarc, and that it will burn itself out in 2 yrs. WRONG!

You said that you only have CT's of your lungs and brain, showing sarcoidosis. Did your pulmonologist do a bronchoscopy and get some of the granulomas in your lungs biopsied.

This is the first thing that you need. With your ACE being high, and going up--you obviously have active disease.

Your neurologist is probably thinking that the "dark spots" on the brain ct are inflammation marks, but nothing to worry about.

With sarc in your lungs, and all the symptoms of NS (neurosarcoidosis) these are significant. I take it they've ruled out MS-- did they do a spinal tap to see if you have the "bands" in your spinal fluid. There is a specific one that is in MS, that NS doesn't have. Also, the CT should have shown if you had demylination of the mylin sheath at the base of the brain--common with MS. You'd also have muscle weakness in your legs and thighs, before any other part of the body with MS

[Guest guest]

I am very frustrated with how my medical care is going and I need

information. January 2001 I was told that I had cancer but later was

diagnosed with sarcoidosis in my lungs(lung function at 46%) and lymph

nodes. When my blood work came back I also had elevated ANA along

with ACE. My lung doctor (sorry I can not spell) mentioned that I may

also have Lupus. But, because I already started prednisone it would

be difficult to DX. I do not think I have Lupus. I have several

friends with the disease, and my symptoms are not similar. I have

been very sick and I knew something else was going on. It took over a

year for the rest of my symptoms to start progressing. I started with

weakness in my left arm and then my right arm. My left side of my

face became numb and then my right side of my face. I have had

ringing in my ears and if I exercise my muscles get so sore I am

unable to move for days. I am exhausted all the time. I have so much

energy to spend and when it is gone that is all there

is----sometimes--I have had to take naps in my car once I get

someplace or after I got dressed. My fingers and arms are numb and

tingly and sometimes my muscles just spasm (after you lift weights and

your muscles tremble). Anyway I have seen neurologist and she tested

me for MS and other diseases. One time a small spots showed up on a

CT scan of my brain, but she felt it was nothing to worry about. Over

time and my progression on symptoms my doctor would not Dx me with MS

because I " had " sarcoidosis. In June I saw a rheumatologist and my

blood tests came back with higher ACE levels. This led me back to my

lung doctor—he does not think I am that sick and that maybe I am

depressed and too stressed out. He told me that I have been the only

patient with sarcoid that has complained of fatigue and I am not that

sick. I am not black and black women get sicker than me. My lungs

are not " that bad " and should be able to live a fairly normal life.

Why the history—I feel crappy—I feel like I have sarcoid in other

organs for weird symptoms I am experiencing. I have only had a CT of

my lungs and my brain. Can someone help understand what other tests I

should request? Or find information Needless to say I have found

another doctor and won't be going back. I am looking for help—any

advise? Is it true that fatigue is not a complaint?????

Thanks Janet