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Sarcoidosis Check List

Posted by Melany Sealy on February 25, 2012 at 5:00 PM

Sarcoidosis Check List

It has probably been a long road for most to get to this point of diagnosis with symptoms that may have already proven to be debilitating and possibly numerous tests and procedures that were all insignificant. Maybe a harsh cough that wouldn't go away or worsened over time, or other symptoms of pain and general ill health. Sometimes people stumble across diagnosis without major symptoms other than enlarged lymph nodes or a persistent cough. With an autoimmune disease such as sarcoidosis which is a multi systemic inflammatory disease, it is often very difficult for doctors to diagnose with just one simple test. The most common tests are x-rays of the chest which may show enlarged lymph nodes or scarring in the lungs. This is one of the simplest tests and most common beginning tests to start diagnosis of sarcoidosis. From this point it is a referral to a pulmologist to get a lung biopsy to determine if granulomas are present.

It is so often stated that sarcoidosis is a lung disease and there are many reasons for this. The main reason is it is easy to see on an x ray and also easy to confirm as lungs can be biopsied without any major complications or threats. Unfortunately this is the bad news for most because sarcoidosis often will affect more than one organ and so you will need to be seen by other specialists who can further determine where the sarcoidosis may be present as well as how to go about treatments needed.

There are people with sarcoidosis that were diagnosed through other routes and with other symptoms such as skin rash, eye troubles, and neurological symptoms. It is a disease that will mimic so many different illnesses and other diseases that for the family doctor to figure out what to do and how to check for diagnosis becomes just as frustrating to them as being ill is to the patient. The doctors have choices to make but the patient is stuck with how they feel until the doctors make the right choices and you are able to start treatments.

As someone new to sarcoidosis it is usually very confusing as the medical professionals seem to all be on different pages as to treatments and a plan of action to maintain their patients. This is where research, resources and awareness need to play a very important role. Medical professionals are taught extremely limited information about sarcoidosis as it is listed in a category of autoimmune diseases that is well over 250 diseases long and it is just to much for a family doctor to learn. We then rely on the specialists that we are sent to and most of them know as little as the family doctors.

A check list of tests that need to be preformed and followed through out a sarcoidosis patients life is as follows:

Blood Tests

  • ACE levels (Shows an increase when sarcoidosis granulomas are present)
  • CBC
  • Serum Calcium
  • Liver Function
  • Immunoglobulin
  • Vitamin D (1,25 - dihydroxyvitamin-D) Recomended Limit Under 42 pg/ml

Abnormalities in any of these test should prompt further investigation as to the cause and also be followed up more closely as these levels can change rapidly. Check the levels at your 6 month check up if no serious abnormalities warrant further investigation.

 

Urine Test

  • 24 hour collection (checking for increased levels of calcium)

This test should be done more frequently if symptoms of sarcoidosis are presenting. Otherwise every 6 month follow up should be fine to check the levels.

 

Respiratory Test

  • PFT (Pulmonary Function Test)

This test will show volumes of oxygen intake as well as the strength of your lungs functions. Every year this should be done if not sooner when functions are abnormal or condition worsens.

 

Eye Exam

  • Ophthalmology tests

The tests preformed by your ophthalmologist are much different than an optometrist as they dilate your eyes and can look further in your eye for symptoms. Get checked yearly.

 

Chest X ray

  • X-ray (Shows any progression of the disease in the lungs)

This should be done on a regular basis such as every year to use as comparison if things progress.

 

CAT Scan or MRI

Scan (Images help doctors to locate the granulomas in areas that are being affected to allow prompt treatment before progression). Should be recomended if systemic symptoms are presenting.

 

ECG or Electrocardiograph

These tests will show if there are abnormalities with heart function and will allow doctors to test further if suspected involvement of the heart. Every 6 months a ECG should be preformed and if there are changes this will be a good indication to follow up with your cardiologist.

 

Not all of these tests need to be done often but the ones that require a constant follow up are blood work, urine, X-rays, ophthalmology tests and PFT's. The ECG and CAT scan can be limited to every year or when symptoms prompt for a further investigation. There are also many other helpful tests to have preformed but most of those are only pertained as your symptoms require such as skin involvement will require biopsies.

There are many avenues to go down when diagnosed but make sure you do your research and find out what will work best for you. It also is recomended by doctors to get you flu vaccines as well as get your pneumonia vaccination which is usually given to people with surpressed immune systems. Check with your doctor on precautionary treatments.

When you have sarcoidosis there may be a never ending list of symptoms and it can be so confusing for your doctors, this is where having these tests done on a regular basis will help them with their decisions as to what the next step would be in diagnosing or treating the patient. It is a very good idea for all who have sarcoidosis to keep a copy of all their results from all of the tests done so they can take them to every appointment with them and have easy access to them when doctors forget to forward a result or they want to compare results from a previous test and have no copies. It makes you get the right help faster as well as cuts back on any unnecessary waiting.

You are the only person who knows what you are feeling and you also are the only real advocate you have for your own well being. Until there is more research available and resources to get information from we must stay aware of things and provide these details to the people who are trying to help us.

Stay strong and positive as well as educate yourself and other as to every aspect of sarcoidosis. It is not a shameful disease as there are no known causes or a cure. We must work together and support each other through all the frustrations and emotional ups and downs. Finding a place to learn and share your frustrations such as support groups with others who are sharing similar battles may be your best place to start. From there find your most recent and reliable sources of information about sarcoidosis and share them.

Melany Sealy/2012

Always great information and resources at www.nationalsarcoidosisorganization.com.

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2 Comments

Reply jacquelyn Agent
8:07 PM on August 14, 2012 
Melany, cannot seem to get back to page where your diet is initially listed. Please help. Computer challenged.
Reply Suzanne
7:14 PM on November 26, 2012 
Thank you, Melany. This post has given me more direction than any appointment with the G.P. and specialists. I thought I was being pushy asking for follow up PFT's. And now I'll make sure to get the other tests done as well.
Suzanne

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