Still not sure this is what I have

• By Paradox
• Posted July 19, 2008 at 12:49 am
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Hi merlyns_girl_cris,

I'm wondering how they diagnosed you with sarcoidosis at all since it sounds like you're still in the no-mans-land of the work-up. Your pulmonologist must be quite certain though if he's already starting prednisone - as I am sure the oncologist has mentioned.

You know, you can just ask the pathologist to get a second opinion and they will send them for you (besides, I don't think most states would allow you to walk out of the path lab with slide samples, something about human tissue and all). It is fairly common for a reading pathologist to get a second opinion from one of his partners and then send away for a third opinion from a neutral out-of-group pathologist as well. They may have already done this.

Where did they get the slides from? Why do the oncologists think it isn't sarcoidosis? Why is the pulmonologist so sure it is? Did a dermatologist look at the shin spots? Was your blood work suspicious for lymphoma? Did they rule out TB? Have you had an ACE test? Do I ask too many questions? (actually these are questions that can help you focus what to ask your doctors - I don't need the answers, you do).

You are definately in a scary spot right now, and I am sorry that you aren't getting any real answers yet. Hopefully something will come to light very soon for you.

Be well, and welcome to the boards

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• By showme26
• Posted July 19, 2008 at 8:48 am
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I know you feel like you are on rocky ground today. But someone who is trying to treat you knows how bad it can get. They are already starting you on prednisone. sarcoidosis is a bad disease and even when you think you are in remission, you are not in remission. Hold fast with the doctors, and whoever is treating you. You have a right to ask questions, its your health. but let them treat you. It looks like you may be just starting out with the disease, but it also looks like it has spread to some serious places. be well. dear. lots of love.

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• By mysapoosrawknw
• Posted July 19, 2008 at 4:06 pm
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dear friend let me ask you first what were your symptons. (shortness of breath, hard coughing......) that's how mine started with what i thought was my sinuses, then i had trouble wlkng frm one place to another without giving out of breath. went to the emergency room had x-ray done doctor came in and said it looks like you have pneumonia but it could be SARCOIDOSIS. of course i thought this was it for me because i had never heard of it before. so he treated for pneumonia and advised if did not get better go to my one doctor. ok it got worst called my doctor he put me in hospital. started IV with antibiotics through iv and my mouth they were STRONG antibiotics where they had to keep chngng my needle to another spot. also a breathing tablet, steroids. and later did biopsy to see if it was sarcoid and it was...so what i am saying to you is ask doctor to admit you instead of giving you the run around because the longer you wait the worst it will get to treat...

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• By merlyns_girl_cris
• Posted July 19, 2008 at 6:46 pm
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After reading your replies, and others symptoms. I am still not sure they are right. I don't have lung problems, shortness or breath, pain, or anything like that. My pulse-ox is always 98% or better. I have no problems going and doing things and walking for hours. My sperometer shows I have slight lung damage from being a smoker, yes I know horrible thing for me. My lungs sound clear, on x-ray look clear. It shows possible infection. My nodules are too small to be seen on a chest x-ray. But were very clear on the CT. Only one that they seen in one area of one lung looked like maybe sarcoid, it actually said not consitant but not of the relm it also said it could be some other lung deiseas. It was this funny looking not solid white, splat.
Everything else on my CT of the lungs said "consitant with lyphoma with involvemnt of the lungs".
I have had a dry cough for years, again probably from smoking.
I also have reative air disorder, or at least that is what they tought it was about 8 years ago.
I have had sinus problems since I was a child. I have a deviated spetum, had surgery that didnt fix it and keep sinisutius because of it.

The symptoms I have are, night sweats (for the last 2 years), fevers very high grade at times over 105, and recurent low grade fevers that I get for days at a time then they may stop for a few days and start all over. Unexplained weight loss of 30lbs in 4 months, also fatiegue and loss of apatite. I bruise very easy, and have bleeding issues also, and nose bleeds.
And about 3 years ago my hair started to get very thin, and still is, but they say now that is probably from what every is in my pituitray gland.

I finally went to the doctor when I felt what I thought was a lump in my breast, that at first I wasnt sure I was feeling it, but it was been there now for 10 months. And they did an ultrasound and found it was a node. I seen a breast oncologist for that, who didnt find anything else as far as breast issues.
She sent me back to my primary, who just 2 weeks later found I had other nodes. Some I knew about, one on the jaw line, and both axillary's. He found the one under the collar bone, and one in my groin also. He sent me for a CT and blood work and I came back to see him 2 weeks later.

My blood has been fine up until about 2 months ago, when they found I had smaller then normal red blood cells, but it was linked to an iron defiancy. And by then my liver function was also going up. My LDH is normal, my sed rate is normal I have no sings of inflamation in the body, my ace was elavated but that could be either, uric acid was slightly elavated that they said could be either gout or lymphoma and I dont have gout. And I dont have kidney stones that can cause it.
I have been tested for about everything there is. They have ruled out everything from all types of hep, hiv, lupus, thyroid problems, TB, and many other things.

I have also had 2 partical seizurs, and possibly more when I have been sleeping and wake up from them and cant seem to actually wake up or walk for a short time after, I actually walking into things and walls after and this isnt normal for me. I am a very light sleeper who wakes at the littest thing and can jump right out of bed and be wide awake. And now have this annoying eye muscle twitch from time to time. I have also had headaches for years. I also forget things, and talk like I am crazy at times. I mix words up, in my head I know what I am going to say and when it comes out it is all mixed up and I am like what was that?

I have sciatica or was told that is what it is, but I dont have a herniated disk. But that seems to come and go, and also seems to be hormonaly triggered.

I think that is all that is wrong with me! lol I'm almost 31, and I am falling apart and have been saying that for years.

My problem with my doctors are, my oncologist isnt sure its sarcoid, even though I did have nonceasting granulomas in one of the nodes they biopsied, but not the other. And because of what they see in my lungs. My primary has said I think you have both. And my pulmanolgist thinks its sarcoid, and that I may have had my first flare up when I was 16 years old from my medical history. When I had a node swell up for no reason that went away with 2 weeks of steroids. But it never went completly back to normal size. But my pulmanologist also says I need to follow up with my ongologist after I stop the prenisone to have another CT to see what nodes went down and what didnt or has grown. And then they might need to do another biopsy of one of those.
The Prednisone isnt helping much, I have some nodes in the axiallry where they took my first node that are going down, and the one in the jaw bone on the same side is going down. But I have others that are still there, and seem to still be slowly growing with new ones starting around them.
So because of all that, and finding that in my brain, I start Methotrexate tomorrow. And work up to 20mg over the next 4 weeks. She is very concerned about my brain and the seizures and wants to get it stopped before I have a bad one.
And they still havent looked to see for sure what is in the bone in my back. And that kind of makes me mad, because I think it might give them a better idea of what might be going on. If it is something growing or if it is a weak spot.
Sorry that was so long, but that is all that is going on with me right now.
Thanks for taking the time to listen.
Cris

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