They found something growing in the lungs

HABS93

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Hi, @HABS93,

First of all, my heart goes out to you.

I don't know what your collective symptoms are, but during your follow up appointment to discuss CT scan results, I strongly urge you to directly ask the doctor if it could be Sarcoidosis.

On an x-ray, Sarcoidosis can be mistaken for pneumonia or lung cancer. It is confirmed by biopsy of affected tissue.

This is a rare disease that most doctors are not familiar with. It is commonly found in the lungs, but can also be systemic. Neurosarcoidosis could mimic ME.

Please keep us posted!

Warm regards,
Z
You were right . Just confirmed from biospy. But they just said sarcoidosis. Definitely have the symptom's for Nerurosaroidosis though. Tomorrow I'll wait to hear what the treatment plans are.
 
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You were right . Just confirmed from biospy. But they just said sarcoidosis. Definitely have the symptom's for Nerurosaroidosis though. Tomorrow I'll wait to hear what the treatment plans are.
Sarcoidosis is often systemic, like been said, and can basically appear everywhere. Most common are lungs, liver and eyes. Make sure you get tested for at least all of theese. In just 10 percent nerves are affected. If you have a brain MRI or maybe of your cervical junction (where your brainstem and spinal cord is seen), show it to a neurologist who is familiar with sarcoidosis. But even the radiologist should have been able to recognize it. So, maybe you‘re lucky and its at least not neurological.
 
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HABS93

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Just as a point of interest, I know a number of people, one fairly frail and in her 80s, who have all recovered quite easily and well from sarcoidosis. I don't know the minutiae here, and I guess there is a lot to know, but there is also a lot of reason to be hopeful.
That's great to know. Either way from this or lymphoma I'm beating it. These damn symptoms have taken a year+ of my life. And I know it's nothing compared to some people's suffering on here. I'll be donating to CFS/ME research until I die . That's true first thing I'm going to do when I get better then work a 12 hour shift .
 

Shoshana

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I'll be donating to CFS/ME research until I die . That's true first thing I'm going to do when I get better then work a 12 hour shift .
Thank you, HABS, You made my day, with that.

And you inspire me too, and you probably inspire many other people, with your strength and the amount of determination and fight, you have.
You go beat the disease, whatever one you have! You have a life to live, the best one you can find or make!
 
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@HABS93
Monday we discuss treatment options with my lung specialist .
Make sure you aske what kind of sarcoidosis you have, it's important information espcially in terms of evaluating their treatment recommendations.
I don't know the minutiae here, and I guess there is a lot to know, but there is also a lot of reason to be hopeful.
I agree with @Jyoti. You have an eminently beatable diagnosis, and I'm soooo glad.


Have you found out yet whether this in instead of the lymphoma diagnosis, or along with it?
 
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HABS93

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@HABS93

Make sure you aske what kind of sarcoidosis you have, it's important information espcially in terms of evaluating their treatment recommendations.

I agree with @Jyoti. You have an imminently beatable diagnosis, and I'm soooo glad.

Have you found out yet whether this in instead of the lymphoma diagnosis, or along with it?
Yes definitely have to figure it out. Since my eyes and heart have symptoms I'm pretty certain it's affecting them. Maybe the brain as well. I talked to someone about his sarcoidosis experience and it's life changing. You'll never be allowed to smoke anything or vape again. Coffee is a big no . But the treatment most be some type of steroids. So I'll have to monitor the liver to see how it's handling it. Eventually taper off of it .
Going to be difficult to see if the symptom's I experience are related. No one can verify it.
 
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[...]But the treatment most be some type of steroids. [...]
Probably cortisone. Prognosis and treatment really depends on wich stage you are. The doctors will tell you, once they’re sure. Between fully remission and lifelong treatment, everything is possible. But you‘re young and duration of the illness not too long. You‘ve got good chances. Wish you the best!
 

HABS93

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You've mentioned your eyes a couple of times. I wonder if they've also tested you for Sjogren's Syndrome. I saw some overlap of symptoms when I was looking for info on Sarcoidosis.
I've read into this while researching for sure. Also found that fatigue is in 50-75% of people who have it. I also found this.
 

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Wolfcub

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I'm wishing you the very best @HABS93 I have just caught up to what's going on.

I bet you are tired ( apart from the Prednisone) It has been a rough road mentally, emotionally, and physically for a few weeks now, on top of the symptoms. Rest whenever you need to, and let the medicine do its work.
I think Prednisone makes you hungrier (?)

I am hoping for the very best for you :)
 

HABS93

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I'm wishing you the very best @HABS93 I have just caught up to what's going on.

I bet you are tired ( apart from the Prednisone) It has been a rough road mentally, emotionally, and physically for a few weeks now, on top of the symptoms. Rest whenever you need to, and let the medicine do its work.
I think Prednisone makes you hungrier (?)

I am hoping for the very best for you :)
Thank you so much. The last couple of weeks have been brutal. I have to take 30mg for six weeks. Hoping I start to feel better soon