Afraid and confused.

• By Paradox
• Posted November 11, 2008 at 7:50 pm
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Hi Unsure,

I know sarcoidosis can be one of the most confusing experiences ever, and not just for those of us with it but for the families and friends that surround us as well. Quite simply, the best thing for anyone's health is information and there just isn't much information on sarcoidosis... well, not accurate, set-in-stone, "THE TRUTH" information anyway. Let me try and give you a little armament against the tide of confusion in the form a few ideas about the disease.

First off, sarcoidosis is, in a way, two types of disease at the same time. We talk about it being "present" in an organ or tissue based on the existence of granulomas; but, sarcoidosis is really an inflammatory process and that occurs throughout the whole body. Your doctors might refer to this as the systemic effects of the disease. It is very possible to have granulomas in one place, like the lungs, while still having pain in knees, ankles, hips and shoulders. Heck, that's even before starting or stopping any treatments.

It sounds like you've had a very rough course of it since your original diagnosis, and shame on your original hospitalist for not educating you about the disease and setting you up proper follow-up from the get go. I do wonder about your pulmonary status though. The way it seems to me is that it might not be sarcoidosis going on with your lungs but it sure seems like something is. I would strongly encourage you to ask your pulmonologist about this. He should be determined to prove what is causing these things to happen, even if it isn't sarc.
You don't mention what is specifically troubling about your kidneys, but there are several ways that sarc can mess with renal function.

Hope some of this is helpful to you.

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• By Tawney
• Posted November 11, 2008 at 8:12 pm
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Hi Unsure

I understand how you feel. It can all be so confusing, so frustrating and so frightening. I still don't have a diagnosis. I have the right symptoms and the right pathology but imaging refuses to divulge anything.

I first heard the word Sarcoidosis in February and have been a member of this site since March. The people here are just the best - they've let me ramble on, ask questions and have shared their experiences. I've taken that information, read madly (understand some of what I read, don't understand a lot) but it's only been in the last couple of weeks that my own unique situation has started to make sense to me. I now understand how my pathology results are telling my story. I have given up on imaging...it does not always show what is going on.

The next step for me is finding doctors who don't mind that I know more about me and my issues than they do. Specialists are confusing. My symptoms fall in one speciality but the cause is usually in another. The neurologist I see, I found for myself and researched his specialities before I went. I'm about to see a 4th ENT who was recommended to me. I see an immunologist and he's nice but he's into waiting and seeing and has failed to notice things in my pathology results. I decided what I most need is a good GP...finding one of those is not easy at all. I think I have very recently found one and so far, whilst being very confused by the muddle I've brought to him, he has been interested enough to put aside what he thinks he knows and listen to what I am saying...which means I've finally got a doctor to test D25, PTH, D1,25 together to see that there's something very abnormal and that my kidneys are showing abnormalities. So far that's taken over 8 years and I still don't have a diagnosis.

I have chest, upper back and rib pain and difficulty breathing upon exertion but imaging says I'm fine. Pathology suggests granulomas.

You know where your pains and aches and issues are. Your body tells you that. There are good doctors and caring doctors but there are also some that do not fit that description. You have something that is a complicated disease that not many doctors properly understand. You deserve the best of doctors and the best of medical care. Unfortunately, you will have to find those doctors and that care for yourself. I was so disgruntled by the end of last year (before 'maybe sarc' arose) that I rang the first neurologist and made it known that most of his report was nonsense. The man was very taken aback...I don't think anyone has ever pointed out that his report was detrimental to them ever getting a diagnosis. The voice therapy team I saw was an insulting experience and I wrote and told them at great length what they did wrong, what they failed to do and what they missed that had subsequently come to light. Believe it or not, I'm a very quiet, non-confrontational person. But there comes a time where you have to take a stand and make it known you're not putting up with this treatment. I'm 42 years old and have basically had the last decade of my life wasted by the inefficency of the medical system and I'm angry about that and determined that despite the system, I will steer myself through it and get my life back somehow.

Please, Unsure, firmly tell your doctors that despite the fact that there doesn't appear to be activity, your body is telling you otherwise. One of my doctors told me that a very elevated urine protein/creatinine ratio was because of contaminated samples (yes, every time, all year, with the ratio always increasing). My new GP did 24 hour tests and I'm leaking protein. So I'm glad I followed up on my kidney pains.

It can all seem hopeless at times, I know, and I have plenty of those hopeless moments. Unfortunately, the only person you can really believe is yourself...what your body is telling you. Keep changing doctors until you find one who sits back and listens. This new GP said to me "ACE - what's that?" But he listened, read what I left for him, I suspect read some more, and then did the tests I asked for which showed what I was trying to say and then did some more off his own back. He embraced my muddle, whereas all other GPs refused to even talk about sarcoidosis as a possibility without a chest x-ray showing sarcoidosis. They do not know that you can have sarcoidosis without it visible on your chest, let sarcoidosis that doesn't even involve the chest. Makes it hard to explain where my elevated ACE came from. Sarcoidosis is not a disease that follows the rule book. The old rule book should be burnt. Just about every person here shares some similarities, then has a whole host of highly individual quirky things happening caused by Sarcoidosis. Sarcoidosis means look for the unusual, the anything everywhere disease.

Please stay hopeful. And you are most definitely not alone.

Cheers
Tawney

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• By KateG
• Posted November 12, 2008 at 7:40 am
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I don't know any specifics about your illness but as far as which doctor to believe, I would think the doctor who did the most thorough testing could be counted on. also the one who took the time to listen to you. Kate.

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• By nogo
• Posted November 18, 2008 at 3:10 pm
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TAWNEY - AMEN, AMEN, AMEN! I couldn't have said it better myself!!!! You are a patient after my own heart. You DO have to take the medical system by the throat and "SPLAIN" to them what needs to be done when they refuse to listen. Been there, Jan

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• By yackee1971
• Posted January 5, 2009 at 5:56 pm
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Someone "loaned" me the New "Wesley Sleep Program: Biblical Rest without Medications." I had had problems falling asleep for years for worrying about things for years, and had tried pills (which worked for a while, but I didn't want to be dependent upon them forever) and even alcohol. But the Wesley Sleep Program is a CD that calms me slowly with some encouraging Bible verses with the dreamy music behind it. The first night was great...I fell asleep quickly. The program helps you cast your cares upon God...Who is in control anyway. Now I use it evrey night and have weened myself off of the medications. It may not be for everyone, but it worked for me. They have a website with more information, so I recommend if it sounds good to give it a try. I'm sorry to hear about your problem, but hope you may want to try this to help you "Cast your cares upon" God because "He cares for you." (I Peter 5:7)

Yackee1971

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