Problems on the long and twisted road to a sarcoidosis diagnosis
Labeling this disease, and even caring for it, can involve bias and confusion
When I learned that an upcoming episode of the “AiArthritis Voices 360 Talk Show” would focus on the difficulty patients have in getting diagnosed, I jumped at the chance to co-host. After all, it took me eight years to get my sarcoidosis diagnosis, starting from when I began searching for answers to my symptoms. I have lots to say on the topic.
The podcast is hosted by Tiffany Westrich-Robertson, co-founder and CEO of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). For this episode, Tiffany and I were joined by Danielle Dass, a patient advocate on the board of directors at Ride the Omnibus. While each of us has a different diagnosis, we all had to wait too long to get it.
By the time I sought help, I’d already passed through my denial stage. I couldn’t fool myself anymore — the pain, severe fatigue, and insomnia were telling me something was wrong and I had to do something about it. But doctors wasted four years of my life, dismissing me because, in their eyes, I “looked fine.”
Diagnoses don’t come easy for countless reasons — and while some are valid and understandable, others are wrong, unfair, and even dangerous. All too often, doctors don’t take our concerns seriously for superficial reasons.
How bias can affect our care
Many kinds of bias can affect medical personnel. Here are three.
Age: Some doctors, it seems, are looking for a Goldilocks patient. When we’re too young, we’re often told we’re merely experiencing “growing pains.” A few decades later, we’re told it’s “just a part of growing old.” Some have even considered the mid-40s problematic; even in those years, we face obstacles.
Gender: Historically, women’s health issues have often been dismissed, in some eras referred to as simply hysteria. The sad (and infuriating) part is that gender bias in medical care still happens today. Our symptoms are too often called psychosomatic, and we’re told to seek therapy and go without tests to determine a physiological cause. Other marginalized groups face similar biases.
Weight: Other doctors are unable to see beyond a patient’s weight. If we’re too heavy, we’re judged as lazy and blamed for our own illnesses. Even if extra weight is the result of medication or the illness itself, the pounds often deter doctors from finding the root cause of the problem or treating it appropriately.
In planning our episode, Danielle said it best: “You shouldn’t have to earn a physician’s interest by doing something before they will agree to investigate.” Amen, sister!
An already challenging process
Of course, getting a swift diagnosis can also involve legitimate challenges that are, nonetheless, frustrating. The process of identifying sarcoidosis, for instance, is considered a “diagnosis of exclusion,” meaning doctors figure out all the conditions it isn’t before finding what it is. “Normal” test results and inconsistent symptoms that mimic other conditions can make the process more difficult.
Further, many general practitioners aren’t familiar with sarcoidosis, so they don’t order the necessary diagnostic tests. A medical student I met at an awareness walk said she’d only seen one paragraph about sarcoidosis in all her years of schooling. She came to the event to meet patients and learn more about the disease — from us. That was a refreshing point of view, but it’s not one we can expect.
After four years of rotating misdiagnoses, I was finally told I had sarcoidosis based on bloodwork, a chest X-ray, and a skin biopsy. But in the years since then, my care hasn’t been straightforward.
Because sarcoidosis involves multiple systems and organs, each area is addressed by its own specialist. Often, these specialists are not well-versed in a disease as rare as sarcoidosis, and communication between physicians is often lacking. That leads them to treat each symptom as its own illness, rather than the complex condition it is.
Sarcoidosis is also a disease of inflammation. As that inflammation builds, it forms granulomas, or clusters of cells that can interfere with organ function. Left unchecked, these granulomas can harden, causing fibrosis or scar tissue. This progression can lead to permanent damage and organ failure, so delays in treatment can be particularly problematic.
And while sarcoidosis isn’t a psychosomatic disease, it can have psychological repercussions. Not only do patients grieve the loss of our lives before the disease, be it work, family, or socializing, but we may also feel lost during the search for a diagnosis. We don’t know where to turn or what to do, and even our greatest supporters are typically unable to help.
It’s not the disease itself we’re longing for — we already have it, after all. It’s the answer, the diagnosis, that we need. The name is a starting point. From there, we can learn. From there, we can cope. From there, we can connect. From there, we can hope.
You can hear a full discussion of this topic once my episode is released Sunday, Oct. 1, wherever you get your podcasts.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Comments
Francis Thompson
Amen! I wish your story didn't sound so familiar. My sarcoidosis story is depressing. I once read that this disease has the following common experiences:
1. Congratulations; the patient normally knows more than the doctors that control your access to care, tests and drugs.
2. If you don't have a strong advocate to help you through the maze that is our health care industry that is ill-equipped to manage the large number of specialists you will require that have no desire to talk to each other. The only way to get a coordinated approach was for the patient to do it themselves. I was trying to manage this without medical training while my body was failing me including my mind. My wife had to assist me with this.
3. I had already given up and wanted to pick out the burial arrangements when my wife forced me to seek help from the Cleveland Clinic over 400 miles from home. I worked and gave me help. No cure, but someone who could help advise me.
4. I was suffering from too many uncoordinated Specialists. I was taking 18 drugs on a daily basis and a subcutaneous injection of Methotrexate each week. I was drugged out of my mind and each specialist would just increase at least 3 drugs each visit.
5. I mandated that each doctor could change whatever they wanted; however, only one drug for a minimum of 3 weeks. If it didn't work, I either went back to the old dose or removed it from my drug cocktail. I made the doctor choose what they thought was their best guess. Eventually, I got down to a more manageable and less toxic combination.
Please note that there is something I found in my journey, my sarcoidosis was impacted by my diet. It was triggered by silica in my diet. It is almost impossible to remove silica (sand) from your diet; however, if your tap water is sourced by well water, you are consuming enough silica to trigger the sarcoidosis. The following changes I made saved me and allowed me to stay working:
1. Table salt contains silica to keep it from caking. Use kosher foods (no additives) or pure sea salt.
2. Baked goods normally contain table salt and silica.
3. A lot of medicine contains silica. Gummy types generally do not.
4. Potato Skins and Bananas have a lot of silica in them.
Once I got silica under control, life became more livable. I am a mutt of Irish decent which makes my sarcoidosis focus on my joints with just some involvement in my lungs. I stopped coughing when I went on my diet. Good luck!
🦋 Kerry Wong
Wow, Francis, there is just so much I relate to in your story - and I'm sorry there's so much you can relate to in mine. But I, too, went to the Cleveland Clinic after years of frustration with my doctors here, and it was so helpful. We were able to come up with a plan that local doctors could follow, and it made a huge difference. I'm glad your wife was able to help along the way. Thank you for sharing your story here - I know there are others reading and nodding along as they relate to you.
~🦋
Shauna Glaspie
I agree with this article. I have had Neurosarcoidosis since I was 25 years old. I am now 46. Many doctors and people even family member that have seen me at my worst have and still overlook my symptoms because of my age and how well I look. I suffer daily with many activities some from the sarcoids some from the meds I have been given for my symptoms. Many doctors tell me I just need to lose weight to help with pain I have in my hands, limbs, back etc. I was 125 when I was first diagnosed but after the years of treatments with cortisteriods and other drugs, it has more doubled. I suffer from sinus infections and bronchitis, and I often try to get on top of it before it moves to my chest because I don't want to develop Pneumonia for a 3rd time. But many times I am brushed off and just told to take over the counter meds and use humidfier. I have been hospitalized twice for the doctors not taking me condition serious. It's a continual fight to make it every day and fight the doctors that don't want to believe it's the sarcoids. I do get tired of fighting but if I give up what's my option...to die! My breathing is quite labored from the scarring on my lungs and when I tell someone I can't do something they often overlook what I'm telling them and think I am just being lazy. I pretty much now what I can and cannot do after 21 years with this condition. I even had someone put a note on my car and ask why are you parked in the handicap stop. You do not appear handicap. The audacity of someone that does not even know me and what I go thru on a daily basis to say. But I'll keep fighting until I can't fight anymore. I hope everyone else does too!
🦋 Kerry Wong
Oh, Shauna, I'm sorry you've had (and continue to have) such a hard time with this, with people (both your medical team and the general public) who just don't understand. The one thing I can say is you are not alone in this ... and I can see that you've got a great fighter's spirit ... but I wish you didn't have to fight so hard.
~🦋
Laurie
Hello Kerry, I’m a big fan! And how extremely frustrating it must have been for you to go from one appointment to the next, and I’m sure multiple physicians just to ultimately find out what an incredibly awful disease we have. My diagnosis was much more direct, with a caveat or two. After a few years of weird blotches on my legs and a change in insurance carriers (Kaiser, a California provider - they diagnosed me with ring worm - no kidding, I was furious to say the least) and then my GP sending me for a PET scan and then to an ENT, who said I had a massive tumor behind my eye, a granuloma, finally my wonderful dermatologist diagnosed my sarcoidosis. She had done her residency in Tulane and seen many cases of it in the south. Here’s the kicker, my UC Davis pulmonologist didn’t believe the results. So after several years of having my disease go untreated and landing in the hospital with organs shutting down and a massive cavity in my right lung caused by untreated aspergillosis, he finally scheduled me for VATS. So a month later a definitive diagnosis for his sake. Since then I’ve battled countless infections in my lungs, numerous hospitalizations with pneumonia and sarcoid flare ups, drug study for scedosporium (lomentospora) and finally a total right lung pneumonectomy. And I too wish there was just one doctor who could treat the entire disease. Thank you for all your heart felt articles and leading the good fight for us. All my best! Laurie
🦋 Kerry Wong
Laurie, thank you so much for your kind words. It seems as though your "direct" diagnosis still brought its slew of unsolvable problems and providers without answers. It especially stinks that after all we go through to get a diagnosis, that doesn't always make the road much smoother. But I hope your biggest challenges are behind you!
~🦋
Susan
Yes Amen! Please send a link to the podcast
🦋 Kerry Wong
You can find more info about the show and all past episodes at https://www.aiarthritis.org/talkshow. This episode will be released on Sunday, October 3. You'll be able to find that at https://www.aiarthritis.org/talkshow-ep90 or wherever you get your podcasts. I'd love to get your thoughts after you listen!
~🦋
wendy a schleyer
Im really tired of having a great doctor to a doctor who never took me seriously to a doctor and new doctor that repeated the cycle. My problem is my doctors that are good leave within two years and the I get stuck with ones that dont get to the bottom becase they dont have time.
🦋 Kerry Wong
Yes, Wendy, that is definitely frustrating! I've lost a few good ones over the years, and I guess it's to be expected somewhat over our lifetime with the disease, but that seems way too often! Perhaps the good doctors could give you a recommendation for someone they think you'd like? Or even find out where they end up? Otherwise, perhaps you can check out the Foundation for Sarcoidosis Research and World Association for Sarcoidosis and Other Granulomatous Disorders - they have a list of recognized sarcoidosis clinics and another with Centers of Excellence; those might be helpful for you, too.
~🦋
Vern T. Minton
I am so very fortunate. My Indianapolis VA medical center figured out my diagnosis with just one visit to ER, followed by hospitalization. My pulmonary Sarc manifested itself as hypercalcilmia, and the resulting confusion was noticeable by my dear wife and my trusted supervisor who took me to ER. The VA’s multidisciplinary medical team figured it out in less than two days, confirmed with the bronc and the biopsy. The pulmonary team at VA took over and I’ve gotten top shelf care for the past 2 1/2 years. I am grateful. 1 John 5:11-13
🦋 Kerry Wong
Thank you so much for sharing this, Vern. We're so used to hearing only negative stories of poor judgment and worse treatment - especially with a rare disease or from the VA. While of course I wish you didn't have to go through it at all, I am so glad that you have such a great care team. Please continue sharing your story - it's just this kind of thing that can bring hope for patients, and can inspire others in the medical field to step up a bit more.
~🦋
Francis Thompson
I went to work in the morning about 10 years ago and while sitting in a meeting I was sweating profusely with chest pains when it looked like the lights were dimming when they can't. I was rushed to the hospital where they thought I had a stroke. However, once the EKG showed my heart was ok, they stopped, admitted me and scheduled me for a stress test. I could not walk up two steps. 18 hours latter while being deprived of food, water and my daily drug cocktail for my Sarcoidosis, I was informed that this could be done on and out patient basis and was discharged with chest pains, sweating, can't walk with severe migraines. I was told to return to the hospital if I get any of the systems I had as they were discharging me with. I was told "these are not life threatening". How can I tell? I wrote on the discharge papers "I am being discharged with every symptom that I am being instructed to return to the ER if I experience. I stated that I am not a litigious person, however, if what you are doing is as dangerous as it sounds to me, my heirs will not have to pay for college. 6 hours latter, I entered the bathroom and looked in the mirror and found that I was bright red from head to toe. I was having a sarcoidosis flare due to a medication change that impacted the dosage of my methotrexate. The doctors did not believe me when I called the ER at 7:00 am and they called me over 9 hours latter. Then they told me not to alter my methotrexate dose and return to the hospital to get a lumbar puncture. If you don't advocate for yourself, you are in big trouble.
🦋 Kerry Wong
Francis, that sounds so scary - and infuriating! Yes, we've got to learn to speak up when we know something isn't right. We know our bodies better than anyone, and if we need help, we've got to keep at it until we get that help, whether from current providers or finding new ones. I hope things have stabilized for you since then.
~🦋
CIndy
Symptoms appeared almost immediately after getting my first dose of Phiz er Vax in 2021.(there are apparently studies being done on it) No doctors believed my symptoms and told me to stay off social media, don't watch the news, don't talk about the Vax at all. Three months later, i developed pneumonia and that's when the hospital suspected Sarc. and 5 months later, it was confirmed. Fortunately with change of diet, AIP, i had been able to slow the progress and my original nodules SHRUNK, but then major stressors hit and i started smoking. I now have new lung nodules.
🦋 Kerry Wong
Wow, Cindy, I'm sorry you had to experience all that. I'm glad you got the confirmation and are seeing positive results (and hope you can ease the stress and find healthier ways to deal with it).
~🦋
Patrick
Your column and the comments above are familiar stories. I was diagnosed with pulmonary sarcoidosis in 2015, at age 60, and cardiac sarc in 2022. Running was my passion. For many years, I averaged sixty miles each week until, in 2009, I rather suddenly could no longer do it and soon quit trying. During an annual physical, I described it as feeling as if my heart wasn't "catching up" leaving me winded. Just age, I was told. No referral, no test, and you know this story. This went on for several years and I began to accept it as the ravages of getting older. After a CT scan for a severe pulmonary embolism episode in 2015, I was called in to speak with a pulmonologist who pointed out several granulomas in my lungs. A tissue sample later, sarcoidosis was confirmed. I had never heard the word and was told that the granulomas were not inflamed so I was OK to go about life. No problem as I had never, in going about day to day life, not felt fine. More correctly, I had never felt in distress except during the embolism event. After retiring and moving in early 2021, I started back several days weekly in the gym and managed to improve my condition and lose weight. Sarcoidosis wasn't really an issue for me, so I thought. A new pulmonologist referred me to a cardiologist who ordered a MRI and PET scan. A diagnosis of cardiac sarcoidosis was confirmed. I took up running again in early 2022 and experienced great humility. What was once fluid and easy was now painful, frustrating, and disheartening. But I kept at it and have since completed four half marathons. I'm no longer fast and my runs are certainly not pretty but I can get it done. All of this got me to researching how sarcoidosis has affected me over the years, mostly when I had I no clue. My experience is the same as others in that so long as you look OK, you're treated as if nothing could be amiss.
🦋 Kerry Wong
Thank you for sharing your story, Patrick - it is frustrating and all too familiar how easily our symptoms and concerns are dismissed. I'm amazed and impressed at your running prowess, though. I couldn't run a block, so half marathons are a great achievement to be proud of. I'm glad you eventually got the answers you needed, and now you've found the community that understands.
~🦋
My sons advocate
When my son (age 22) experienced red, inflamed nodules on his arms and legs, severe “arthritic” pain in almost every joint of his body and severe swelling of his ankles he went to our local walk in and was diagnosed with cellulitis in his ankle from an insect bite. He was prescribed an antibiotic to treat the “cellulitis.” However, I am a nurse and what he had did not appear to be cellulitis to me. He went to the local ER for a second opinion. They did a full Luke’s disease work up and told him to follow up with his PCP. The Luke’s panel came back completely normal. He followed up with his PCP and I went with him to advise I am currently being followed by dermatology and rheumatology for “potential” scleroderma AND we have other auto immune disease in our family. I requested a referral to both dermatology and rheumatology for him as well. The wait to get him in to my dermatologist was FIVE months. But he had the nodules now! So I asked my provider if there was any way he could get him in sooner and he did! Within a week he was seen by dermatology while we waited for his rheumatology appointment in two more weeks. Dermatology diagnosed him with panniculitis or erythema nodosum, which essentially means “red nodules” many times caused by strep. He got a bunch of labs done, which included a throat culture for strep and a strep titer to see if he has had a recent ‘undiagnosed’ strep infection. Both negative. Two weeks later he was seen by rheumatology. The rheumatologist knew IMMEDIATELY he probably had sarcoidosis. He ordered more labs and a chest xray. The chest xray showed abnormal findings with mediastinal and hilar enlargement so a CT was ordered. He went, today, for the CT scan and results are pending but when I say he has ALL the symptoms of sarcoidosis, I mean he has ALL the symptoms. I’m confident in the diagnosis and am so thankful we were able to get the diagnosis in less than a month. I’m thankful for his PCP and my dermatologist! And for his rheumatologists knowledge of uncommon disease processes! I’m also thankful that both specialists are working together, for keeping up on each others VERY IN DEPTH appointment summaries AND for my own knowledge to advocate for my child. Now we just wait for the CT results and go from there! But, I’m in hopes we caught this in a timely manner and now that he’s got a team of providers he shouldn’t have any problems getting in to see them in the event of any flare ups. Thank you all for your stories! And good luck to everyone!
🦋 Kerry Wong
Wow, Traci - that's quite a journey! I hope the confirmed diagnosis and great *communicative* team helps come up with a treatment plan that brings your son relief quickly. He is fortunate to have such a strong advocate in you.
~🦋
Steve Boegel
I too spent many years complaining to Drs that “something” was wrong with me , over 25 years in fact . I heard everything, I was fat and lazy, I was depressed, it was my imagination etc . I was finally diagnosed in late 2017 when a chest X-ray I demanded due to chest pains / breathing issues looked like I had advanced lung cancer and I was told to expect that diagnosis. Instead a few days later after a CT scan the technician told me he suspected sarcoidosis which I had never even heard of . Seven years later , just before I turn 60 I probably know more about sarcoidosis than most Drs . In hindsight I suspect I had my first symptoms as a pre teen in the early 70’s . I fixed photocopiers for 30 years, inhaling the microscopic toner particulate and exposure to lots of other chemicals in the job led to what I now know were flare ups of sarcoid triggered by the toner and chemicals I was exposed to daily . Wish I had been taken seriously by Drs 30 years ago perhaps I would be such a mess now . Thank you for shining a light on this insidious disease!
Steve
🦋 Kerry Wong
Thank you for sharing your story, Steve - it's awful that you had to wait so long to get answers. It's sad how much we have to learn on our own, so now we've got to do our best to raise awareness and make it a little easier for the next person.
~🦋