Hi Everyone!
I am new to this community and new to the disease as well. I have been experiencing autoimmune symptoms all of my life but had an extreme flare up last year at this time. After being tested in Pittsburgh at the Lupus Center and finding no definate diagnosis. I am still not sure what is going on. Just two months ago, after a CT for abdominal pain, the radiologist found fibrotic changes in my lungs and nodules in my lungs varying in location and size. The nodules are in both lungs. I was sent to a lung specialist that was suspecting Sarcoidosis, after a pulmonary functions test showed abnormal diffusion capacity ~ we are doing a biopsy on November 11. I will get results on the 20th of November. I am a 29 year old mother of one. I am a nervous wreck and do not know what to expect. The research I have done on the web suggests that Sarcoidosis can come and go, however, other things that I have read say that once the nodules are on the lung the disease is considered progressive. I am looking for some advice and more information on what to expect with treatment and diagnosis and what other specialists need to become involved with this disease. Thank you for your help and support. I feel so alone!!!
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100's of Questions...What to Expect?
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4 replies
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- By amnd
- Posted November 1, 2009 at 6:18 pm
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are they doing a bronoschopsy i had that and the mediaoscopy i have no idea on how to spell it let me know , the bronch wasn't to bad i just was a little sick and my throat was a little sore for a couple of days
- By IreneMarie
- Posted November 1, 2009 at 9:47 pm
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Hopefully you have a saavy Rheumatologist and a pulmonologist well versed in Sarc. You will need a good opthalmologist for a yearly exam with Sarc in mind (never let any eye symptoms go unchecked). A thorough Endocrinology exam of all glands and hormone levels and a thyroid ultrasound is recommended. Your PCP should be open to learning about Sarc as you go and is responsible for monitoring your fasting glucose, b/p and cholesterol which are all effected by Sarc and Sarc meds.
Biopsy is usually gold standard for definitive diagnosis of Sarc. Symptoms, blood tests, imaging, etc. are the process of elimination or indirect method of diagnosis - usually a long and convoluted journey. But you can shorten it some what since you already sense what you are looking for. If you insurance does not require physician referrals make all these appointments for the shortest period of time posiible so you can collect all your labs and have them all done on the same day and cc'd to all your docs. The sooner you see your all the docs on your 'Sarc team' the sooner you can get your imaging done and decide what meds to consider incase your biopsy is negative. You should assemble them anyway and have them all in on your care should you decide that you want the pulm. to be your team leader.
I needed immediate treatment with Prednisone for vision loss from Sarc caused uveitis. But if I could do it over without the threat of blindness I would not choose that most common medication prescribed - PREDNISONE. Too many bad side effects, too hard to taper or come off the med., but it did work for me and I did have just about all the negative side effects from it.
Yes, some are fortunate to have only one flare up, but everyone on this site (except maybe some newbies) is chronic so there are lots of stories to identify with and lots of good info if you use the 'Find It' search window at the top of this page to peruse the Archives.
Any doc who is arrogant, clueless or not open to your changing condition and any net research you would like to discuss is wasting your time. Find another.
If you get a definitive diagnosis from your biopsy see if your doc will advocate something with the least nasty side effects to your insurance. Usually the Rheumie does it, siting "Medical necessity and compassionate need." "Humane medical treatment"
As you learn about Sarc keep an eye out for these things in your kids and be sure everyone is checked yearly for Lyme disease and TB including yourself. Look up the Sarc meds so you can know the benefits and side effects before you talk with the docs - they will not have the pharmacopia in their heads but will hit the highlights.
Keep a journal and keep copies of all lab test results and imaging summaries. I have Sarc health care flow charts (algorithms) you can use to present to your docs at your periodic visits which highlight your current symptoms and changing symptoms and can be easily modified as time goes by. You should not take any Vit. D or Calcium suppliments until having the endocrinologist check all those things anduntil you have checked back in this forum with your results so saavy members can direct you or you can check the Archives for Vit. D and Calcium Metabolism in Sarcoidosis - it is just the opposite of other auto immune needs in this area.
Well, I guess this is a good start.
Welcome and good journey,
I.
- By kmb
- Posted November 2, 2009 at 9:32 am
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You dont have to feel alone anymore. Finding this site was probably the best thing you could have done 'pre-biopsy'. I could only wish that I had a group like this when I was diagnosed in 2000(I was 28). It looks like you are on the right path by trying to educate yourself. If your biopsy proves sarcoidosis then you will have decisions to make based on where you have involvement and how bad it is. Welcome to the group.
- By clrw69
- Posted November 2, 2009 at 10:42 am
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Well after your brochoscopy if they find out it's sarcoidosis, you will need (other than your pulumonary specialist) you'll need to see a opthmologist, heart specialist, kidney specialist, I would recommend a full MRI (to check your liver, spleen, pancreas, etc... and DEFINATELY your spinal cord and brain. As I should have done those and didn't and now I have sarcoid in my lungs, liver, pancreas, and spinal cord and I have rhuematoid arthritis also. It can also be in your bones too! I wish someone had told me that by any doctor when they knew I first had it. I had to wait till bad symtoms started to happen then they sent me to have the other stuff done. Although it's a lot to take in all at once because I know it's scary to hear that stuff.....But I wish I would have done all these sooner! I had to find out slowly over ther the last 8+ years! Good luck to you and god bless.....I'll pray for you like I do for all that have our disease!
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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