Join the Conversation on
344 people
0 stories
16 posts
About Neurosarcoidosis
Explore Our Newsletters
What's New in Neurosarcoidosis
See full photo

Have you ever met anyone who lives with the same rare disease as you? What was it like?

Living with rare disease can not only feel rare in the sense of statistics, but also in building community and finding someone to share experiences with. Finding others that relate can be hard. Have you ever met someone that shares your same rare condition? If so, what was that like for you?

Would love to hear your experience! Feel free to share in the comments below.

P.S. If you need a resource to help you connect with others with rare disease, you can check out the nonprofit NORD, a great resource for rare disease patients:

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome #morgellons #Syringomyelia #Neurosarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

Home - NORD (National Organization for Rare Disorders)

NORD, a 501(c)(3) organization, is the leading patient advocacy organization dedicated to improving the lives of individuals and families living with rare diseases.
9 reactions 14 comments
See full photo

How long did it take you to get diagnosed with your rare disease?

Living with a rare disease can mean years (and maybe even decades) of hospital visits, appointments, treatments, and procedures before receiving a proper diagnosis.

How long did it take for you to get your rare disease diagnosis? What has that process been like for you?

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
#MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
#morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

3 reactions 23 comments
See full photo

What frustrates you most about living with a rare disease?

It's a no-brainer that living with a rare condition can be super challenging and frustrating at that. What about your rare condition do you find most frustrating? What do you wish people understood more about living with a rare disease?

Let me know in the comments below 💌

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #MightyTogether #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
#MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
#morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

11 reactions 22 comments

I have not been in remission for 3 years. I lost my eye sight, falling and having seizures due to the granduloms. They are now telling me I may need a bone marrow done to check it because I had surgery and my hemoglobin dropped to 4 and resting heart rate was 238. I'm so scared...this is so rare the only treatment is predisone which is killing me after 3 years of this.



A Neurosarcoidosis Warrior

That’s me. I’m a neurosarcoidosis warrior. What is neurosarcoidosis? It’s a rare inflammatory disease where small immune cell clumps called granulomas form on any part of the body. In the case of neurosarcoidosis, the central nervous system is inflamed. It’s intense inflammation of the nerves and brain.

neurosarcoidosis is just one form of sarcoidosis. sarcoidosis is, in general, a rare disease with around 200,000 people who have some form of the disease in the United States. Most of the cases of sarcoidosis affect the lungs first and many cases spread to other parts of the body. neurosarcoidosis is even rarer. About 5% to 15% of confirmed sarcoidosis cases are neurosarcoidosis.

My body’s presentation of neurosarcoidosis is even rarer with it being in the brain and central nervous system only. That’s part of the reason why it took so long for me to get an official diagnosis and it required a brain biopsy at the Mayo Clinic. I’m actually fortunate to get an official diagnosis. Many sarcoidoses sufferers don’t get a diagnosis ever or a diagnosis takes years when permanent damage to the body has already taken place.

If you’re not familiar with a brain biopsy, it’s when a brain surgeon drills a small hole in the skull and collects brain tissue. The tissue is then tested and evaluated to determine the cause of a person’s illness. I was fortunate to able to go to the Mayo Clinic and have a world-class brain surgeon do this procedure, Dr. Fredric Myer. The brain biopsy was hardly even considered in any other hospital or doctor that I visited throughout the past year and a half. I’ll always be thankful for the opportunity to even go to the Mayo Clinic in January of this year.

Once I got the diagnosis, I was immediately put on the Mayo Clinic’s treatment plan, which is 40 milligrams of Predisone each day (the cornerstone of treatment for many forms of sarcoidosis) and Remicade infusions every other week, now it’s every month.

Prior to falling ill, I’ve been working as a marketing associate at Penn State in State Collge, PA and would make frequent trips back to Long Island, New York my hometown. I was also enjoying time with my partner, Sean and exercising a lot. The symptoms came on in the spring of 2018. I experienced a variety of neurological symptoms from severe headaches shortly after I graduated with my master’s degree that most doctor’s thought where sinus headaches or an inner ear infection, vomiting every morning which prompted doctors to do multiple pregnancy tests, complete loss of my menstrual cycle, body tremors, intense brain fog, and difficulty walking and speaking at times. It all came to a head a couple of days after Thanksgiving 2018 when I woke up from a nap and couldn’t talk at all. Sean was home at that time and was asking me simple questions, such as “What is your nephew’s name?”. I knew what he was asking of me, but couldn’t articulate a response. That was it, we went to the local hospital in State College where I was then transferred to Geisinger in Danville, PA.

After a week at Geisinger, there was no conclusive evidence for any particular disease. The best theory was that I had a newly discovered syndrome called CLIPPERS. I was put on a steroid trial and it actually worked for a few months. I returned to work and was living a fairly normal life with little side effects from the steroids.

However, trying to get off the steroids was difficult. I experienced some new symptoms. In May 2019, around Memorial Day, I was at work and seemed to blackout at my desk. It’s strange. I don’t remember anything about this incident, but I was able to talk to my colleagues and the EMTs who took me to the hospital. You might be thinking I had a seizure, but the EEG couldn’t confirm a seizure. After another week in the hospital, there was still no definitive diagnosis, but I was back on steroids and the immunosuppressant Cellcept. That worked for me throughout the summer and was able to travel to New York with Sean to see family and friends.

Shortly after a much-needed vacation to Assateague Island, Maryland in September 2019 with Sean and friends, I woke up with double vision that progressed quickly. Even my eyeglass prescription changed drastically. I had to wear an eyepatch to read and do work. I couldn’t walk on my own either because the double vision was disorienting. The doctors at Geisinger ran eye exams which didn’t show any damage to my eyeballs and had no idea would might be causing the double vision and overall vision changes.

It was around this time that Sean and I talked about going to the Mayo Clinic. Sean thankfully poured a lot of time and resources into planning a visit to the Mayo Clinic in Rochester, Minnesota. Every doctor’s appointment was planned for us without any conflicts and the staff was and continue to be incredibly kind and on top of every detail. We were even able to get appointments in January of this year. You all know how cold and snowy Minnesota can be in January.

Finally, after two trips to the Mayo Clinic it was decided by my neurologist at Mayo Clinic, Dr. Andrew McKeon that a brain biopsy would be the only option to obtaining an official diagnosis as all other tests came back negative for any disease. A brain biopsy was planned for the following day and went very smoothly. In two weeks I had the official diagnosis of neurosarcoidosis. It was a relief and offered some hope.

Now it’s April 2020 and there continue to be a lot of bumps in the road. I’m still having symptoms that include darkened vision, sensitivity to light especially the sun, joint pain, my hands, and feet fall asleep, brain fog, and depression. We’re not sure what symptoms the steroids are contributing to and which are from the neurosarcoidosis. I’m still working with doctors to try to get an understanding of my vision issues.

There are glimmers of hope. I’m able to work each day, especially during the COVID-19 pandemic. Around 3 pm, my body starts to relax and I feel a lot better mentally and physically. It’s an unpredictable disease. I don’t know what each day will bring. I still get sad when I can’t wake up the way I did two years ago with physical energy ready to take on the day.

I get up every day, take a shower, eat breakfast and get on with my day. I wear sunglasses when I work on my computer and take frequent breaks to rest my eyes. Sean and I also try to walk every day or I’ll do light Yin yoga and meditate. We’ve been doing at least 2 mile walks each day! I’m now following the Autoimmune Protocol Diet which has resulted in many people with autoimmune diseases, such as neurosarcoidosis, going into remission or lessen the severity of their symptoms.

When Sean and I researched the symptoms of neurosarcoidosis we realized that I have had most of the classic symptoms, including the double vision. sarcoidosis is a disease that is not widely researched because it’s so rare. The causes are not clearly identified and there’s no cure at this time. The suspected causes are genetics and environmental factors, but I may never know what caused my case and that’s okay.

I don’t know what the future holds for me with this disease, but I know I will continue to take care of my body as bests I can, live in the moment, and practice gratitude and compassion. April is sarcoidosis Awareness Month. Now with the COVID-19 pandemic, it’s even more important to support sarcoidosis awareness. Many sarcoidosis patients have compromised immune systems due to immunosuppressant medications. that make us even more suspectable to viruses and infections. Keep on fighting sarcoidosis warriors!


New to The Mighty

I'm fairly new to The Mighty. I took some time to look through the site and read some of the conversations. There's a lot of positive discussion and though here something that I've haven't seen on other support group-type of websites. I was diagnosed with neurosarcoidosis in January 2020 after suffering from a range of strange neurological symptoms that doctors couldn't understand. Thanks to a visit to the Mayo Clinic and a brain biopsy I got an official diagnosis.

I'm currently on an infusion treatment as well as steroids, which I have been on for well over a year. I'm still struggling with vision issues, muscle pains, balance issues when I stand and cognitive impairment. I also am in a depression and deal with anxiety everyday.

On a positive note I've established a meditation practice, Yin yoga, as well as taking walks with my partner. Basically I'm trying to move my body as much as I can within my current abilities. That seems to help my body and my mindset.

It would be great to connect with other members of the The Mighty soon. I've been at home a lot longer than before COVID-19 so I can share advice and activities to staying strong during these trying times. - Janine



Hi everyone, I have elevated ACE, in my CSF, scar tissue in my MRI and CT of brain, and elevated WBC count in my CSF. Is it likely I have this?



How do I LIVE?

You might wonder how one continues to live a meaningful life when a change in health turns their life topsy-turvy. It’s weird, actually. In my healthy normal past life (just yesterday), I worried about stuff like this. After all, the news is all around you, happening to everyone else, it seems. I figured the odds were pretty good for something like #BreastCancer, seeing the statistics of 1 in 5 women. Never did I entertain being blessed with a rare disorder like #Sarcoidosis. Never did I think that I would become one of those “interesting” patients. Nor did I have an inkling on that very first day where they said “it might be sarcoidosis” that “might” meant possibly years before “probably” would be uttered. That EVERYTHING ELSE would have to be ruled out first in a daunting two years of expensive testing! That “might” currently meant “possible” on the spectrum of “possible-probable-definite.” And that I would experience great relief when finally the specialist would say “I’m very comfortable calling this cardiac sarcoidosis.” And to finally see “ #Neurosarcoidosis” in my list of diagnoses, because finally, that meant that medication could be prescribed and I could be treated! BUT… never did I entertain the thought that the great, long-hoped-for-medicine might not work! That after all this time and hope and anxious waiting would my symptoms continue to decline even more, to the point that I could no longer work(?!) Well, here I am now, all but fired from my job, “encouraged” to go on #Disability, so that,in the event that I DO eventually improve, I can return to my job.
So, how does one live now…when until now their type A overachiever personality is forced to reinvent the opposite life? A life of (actually welcome) rest, inactivity and (can we even dare think of) possibly boredom? Fortunately for me, I’ve had so many dreams in my “bucket” that I don’t think I’ll be bored for a while. I have projects I want to learn, a house to organize and improve, friends to hang out with and many hobbies. I plan to eat better, spend more time cooking new recipes, rather than the same things we’ve been eating over and over for years. I can finally indulge my senses, try out these different fragrances from my favorite company “Scentsy” who makes such perfect fragrances and sells such beautiful warmers. I hope to have one in each room eventually and rotate the scents based on my mood and the season. Vanilla makes me happy anytime!

I plan to capitalize on my senses for enjoyment of fragrances, food and of course, the outdoors. I can drive because I only have to sit. Sit, drive, nap, enjoy….
Life’s surprises can be a blessing. We have to be open to changing our course. My senses are still working…I can still live!


I thought Suicide might be the answer to my Chronic Illness

I have had been chronically ill for almost seven years. What was a relief as I could finally put a name to all of the pain and weirdness I felt in my body #Sarcoidosis and #Neurosarcoidosis. What was not good, as I did not know how to deal with some of the fatigue, pain, and symptoms as well as the anxiety and #Depression that came with this disease. Sarcoidosis is a highly complex autoimmune disease which can attack any part of the body. It often attacks the lungs and is often misdiagnosed as lymphoma. The white blood cells over multiple when you get an infection. The extra ones have nowhere to go. So, they attach themselves to any organ or place in the body through the bloodstream and form tiny clusters that are called granulomas. Then they can wreak havoc and/or destroy the organs or places they accumulate. Mine is in the lungs, liver, kidneys, muscles, and nerves. But, no matter where they start they can spread anywhere over time. What the doctors don’t tell you at first is that there are additional symptoms that may be caused by Sarcoidosis. Early onset arthritis, depression, extreme fatigue, painful joints, kidney stones, enlarged liver, all of which I have suffered or continue to suffer with. Why would I want to continue to suffer? I have thought, “What would be so wrong with ending it all and being at peace?”.

I also have had failed marriages. Three to be exact. Going through a divorce is a stressful thing, especially when you cause it. The first one was more mutual. We were both young and did not know what we really wanted out of life. The second one, my fault. A beautiful and kind lady, but I was going through my worst and darkest hours at that time. The third, which I am going through now, is because I rushed in and really did not watch for the signs that she was using me. No excuses for these but getting it out there that I am not perfect. These, while brought on by me, still led to severe depression bouts. Maybe I am not able to love. Perhaps I am just not marriage material. Maybe I cannot love myself enough to be loved by others. I sometimes think, “Will I die alone? What the point?”.

I have other things that caused me to think about #Suicide. My brother suffers from #BipolarDisorder. We don’t talk about it, but I am sure there are a few relatives looking back who may have had similar disorders. I remember vividly the day that my brother seemed to be fine, then something snapped. Sometimes I think, “Maybe it will happen to me? What if I just, snap?”

So, why not suicide? At my darkest hour. I was in the middle of my second divorce. I was desperate for pain relief, I was beyond depressed. I slept for hours and days looked dark. I had to take time off work because of the unbearable pain and fatigue. I bought a gun. I figured, get through the divorce, get my things for my family and I could then finally be at peace. I had traveled extensively throughout the world and the US. I had done things in a professional career that made me proud. I raised a great daughter. What more could anyone want? This is ok to end it if I do not want to continue. It is not selfish, it is not a cop-out. It is life and life sometimes suck.

I get why people sometimes commit suicide. I do not condone it, but I get it. I see how we look at people like Robin Williams, Anthony Bourdain, and Kate Spade. We say. “They had it all, why would they throw it all away?”. For them, it was probably more than they could bear. They had done much of what we all think we want. To be successful. To travel the world, to be rich. But, none of that takes away the demons, emotional scars, or the pain. I am known as a jokester. A person who likes to make other people laugh. I post silly pictures to Facebook. I do these things despite the pain I am in. I do it despite the way I sometimes feel on the inside.

So yes, I have contemplated suicide. I even planned it out. What stopped me? Love. Love for what might be. Love for my family and friends. They may not know it, but there are friends that have helped me beyond belief and just a word, a hug, a gesture has helped through some difficult times. Am I healed, nope. Do I sometimes get into the goddam rabbit hole of self-doubt, #Anxiety and self-loathing, yes. Is it hard to fight against it sometimes, yes. I continue to fight. Because my friend Ryan, who committed suicide two years ago, cannot fight anymore. It is not easy, it is tiring, but I want to see my granddaughters grow up. I want to work on cars with my nephews. I want to tease my sister. I want to laugh with my friends. I still want to travel more. I want to grow old with someone I love someday. I will fight because it is the only choice I have.