Renal Sarcoidosis, what does that mean?

This whole thing with the Sarc has me more than a little lost. I don't know yet how to process all of the information out there. I'm trying to understand this disease and what it means for me.

I was diagnosed at the end of July. At that time I had been having abdominal pain from endometriosis, and had a CAT scan done. There were no granulomas in my abdominal organs.

Hard as it is to admit, I attempted suicide at the end of August. The first and last time I will ever do that. But when I was taken to the hospital another abdominal CAT scan was done because I had been having pain on my right side.

The Intern tried to get by with telling me that the CAT scan was "okay". When I pushed him, he admitted that there were granulomas in my liver and kidneys. I tried to get him to tell me what was on my lung ex-ray but he just slipped past me with that one, just said he couldn't tell me since the radiologist hadn't read it yet.

Everything that I can find online says that Sarc in the Kidneys is rare?! If so, what does that mean to me? How did it form in only one month?

I've been having some urinary problems on and off. My primary says that it's probably just chronic bladder infections and put me on antibiotics. Should I be concerned that it could be something more?

If my sarc is moving that fast, what does that mean? What are my chances of surviving this?

I'm scared out of my mind.

It feels as though there is a lump in the muscle in my arm, is this my imagination? It's a focal area of pain in that area, where I felt it. Am I just going crazy?

I don't know what to think anymore.

By ozealan
Posted November 8, 2009 at 7:28 am
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Hi Brandie,

It could be a few things. Is your appointment with Dr Baughman this year or next. It would be best to hear what the doc has to say before you make any major decisions. It might not be a bad idea if you make an appointment with the Cleveland Clinic as well, just in case a much earlier appointment is available and you can cancel the other, to help find out what you need a little sooner.

Alan

By Brandie228
Posted November 8, 2009 at 7:57 am
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I don't have an appointment with Dr. Baughman yet. I have to wait for him to review my medical records and then decide when I get to see him.

The waiting is like torture!

By r2d2022
Posted November 8, 2009 at 8:53 am
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Hi, sorry about your anxiety. May I say you need to quit worrying. You are making mental monsters that are controlling your life. Try and stay busy to keep your mind off of your problems. Think about this, young people are dying in the military each and every day. They are also dying from many different reasons, wrecks, sickness, shootings, accidents, etc. I have the same fears as you but I say "I will control my fears, they will not control me". Good luck, hope this helps.

By kriss3497
Posted November 8, 2009 at 3:38 pm
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Brandie,

I think you should see a therapist. A good qualified therapist who can recommend something for anxiety. I have been overly anxious about my sickness before and zoloft helped. My family has a history of depression and anxiety, so I am at least not afraid to be on medicine. I have seen how much they help someone first hand. It isn't an easy journey that you are on and you need someone to talk to about your fears and your expectations. You will find as this diagnosis wears on that doctors won't hurry unless your case is critical and there is something they can do to help. Otherwise, their appointments will be made and you will have to wait and wait. This is not good for an anxious person. Therefore, the only remedy, since you can't hurry the doctors, is to change your perspective of things you can control. Does this make sense? I hope so. May I pray for you right now? I pray that Jesus will give you comfort and that He will give you a friend to help advocate for you in order to help you receive the care you need from the doctors. I also pray that you find some happiness in your life. I ask this in Jesus' name, Amen. =)

By David2727
Posted November 8, 2009 at 6:40 pm
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My urinary problems (frequentley urinating, painfull bladder, not able to empty the bladder totally) were due to calcium kidney stones related to sarcoidosis.

I've also been very tired and had severe eye and salivary gland inflammation, skin leisons etc...but the bladder pain was worst. They also gave me a ussless treat with antibiotics for a year, only then they found out it were stones, not infections

David

By ImHere
Posted November 9, 2009 at 12:22 am
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Hi,
I have renal sarc like you. Yes, it is rare, but it can be treated. I know that you're worried because you don't understand everything that's happening right now, but try not to be so upset. Stress tends to make sarc worse. Things may not look good right now, but they will get better. I was diagnosed with sarc in my kidneys in 2007. I have been on cellept, cytoxin, and now humira. My nephrologist tells me that my kidneys are doing well. In other words, the condition is stabilized. Just make sure that you see your doctor to make sure the diagnosis is correct. BTW, sarc doesn't usually develop over night. It was probably there and no one picked it up. My prayers are with you. Hang in there.

By Boxerlover
Posted November 9, 2009 at 12:30 am
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I too have renal sarc, just make sure you have a good nephrologist and that you are being watched. I had a huge progression of my sarc in 18 months, I went from stage 1 to 4 (in the lungs), my blood work was all off, tons of kidney stones, infections,pneumonia, etc. I thought with it getting that bad in that short a time I was doomed! That was 2 years ago and even though things are not great, things have settled down. That's the nature of sarc. Just make sure to see your nephrologist if you notice any changes and he'll keep track of your kidney function.

I know it's scary, but hang in there!

By Boxerlover
Posted November 9, 2009 at 6:25 pm
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Hey Dave, I am on Methotrexate injections. My rheumy will not put me on any of the biologics because of my cancer. We thought the metho was working but with my latest results on my O2 sats not being good, I don't know what he is going to do. He mentioned adding some new meds that work in conjuncture with metho.

What about you?

By David2727
Posted November 10, 2009 at 10:04 am
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The metotrexate didnt do a thing for me, certainly not for the kidney stones who were my biggest problem. So they switch to biologicals; remicade in combination with imuran. But it's the remicade that makes most of the difference, not the imuran cause i added imuran later on when i allready had the benifical affects from the Remicade.

You know allready, i think, that for the kidney stones i also take 3 times a day potassium citrate. Without it i have a lot more stones. I also avoid oxalate containing foods. I also take one ketoconazole a day, that also helps expecially when i have a 'stone surge'. It blocks the D 1.25.

David

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