Waiting for dx. Maybe it's sarcoidosis.

EnigmaticMelissa
0 Recommendations

I am wondering if people will post a reply with their symptoms of sarc when they were diagnosed. I have a liver disease that I've known about for a few years now that is been well controlled.

In May I started having neurological symptoms and they have gotten worse. I have had several tests. My sed rate and C-reactive protein are higher than they've ever been. My brain and c-spine MRI were normal. Lumbar puncture showed increased intercranial pressure (20) and increased IgG antibodies.

MS was top on the list but they are trying to rule out mimic diseases. My MRI was normal so they don't think I have that.

Well I had a CT done Monday and it showed a lesion on my left lung (1.2 cm) and several prominant lymph nodes throughout my abdomen, more on the right side and in the pelvis.

I have no gallbladder, no appendix, and no idea what it is, lol. Actually some people have suggested sarcoidosis and it is the first I have ever heard of it.

So I appreciate and input or experiences you can share with me.

Also, does anyone know of a good doctor in Nebraska to go to? I am set to go to the Mayo Clinic in MN, jsut waiting for the date.

2 replies

Cloudnine
  • By Cloudnine
  • Posted August 29, 2008 at 5:58 am

Personally I would want a biopsy done on one of those lovely lymph nodes. I believe it might answer a lot of questions. I could be wrong but I believe that would be the next course of action.

My symptoms in the beginning were night sweats, fevers, general achy feeling, fatigue, sore throats, hoarseness, painful armpits, just basically flu like feeling, confusion. Oh wait those still are my symptoms still. Yeah and throw my new friend dry eye in there that has been going on but I couldn't make the connection till this week. I am sure I have missed some symptoms. These symptoms could fit many conditions. So trying to compare symptoms with what someone with sarcoidosis has to what you are feeling might not get you anywhere.

This is why I feel the biopsy is so important. It was so simple to have done. I had a pathologist in the surgery room when the surgeon did mine and my family knew before me. The nurse wrote it down for me so when I got up, I could see that I didn't have two cancers. I had cancer when they found the sarcoidosis. Before the biopsy I did have a TB test and other tests to rule out other things.

I hope that you are able to find some answers that you are looking for. All I can come up with is biopsy.

ilovethebluz

*fatigue
*aching from the neck down
*burning pains in multiple localized areas
*occasional pinching pains in random areas of the trunk that at times are breath-taking
* on rarer occasions- sharp pains in my head
*multiple- 8 to 10 in. patches found on the outside of my intestines, during a hysterectomy, that a surgeon described as having a hardend gum like consistancy
*heart block
*kidney failure
*enlarged lymphnodes
*most recently- cardiomyopathy
----they say I do not have it in my lungs

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