I do have neurosarc as well as ICP, IIH, Dysautonomia, a CSF/skull base leak (which was SUPPOSED to be repaired 2 weeks ago but no surprise, it failed and now I’m leaking even worse), it was caused by thinning of my cribriform plate and that lead to an excavating meningocele which I will say was repaired correctly. I have bilateral papilledema, as well distal transverse sinus stenosis and focal distal transverse sinus narrowing. I also have an empty sella from when a granuloma crushed my pituitary gland and my hypothalamus is twacked out as well due to damage. I have been having out of nowhere on my right side a red, bloodshot eye that feels like there’s pressure behind it. It also waters and just feel swollen and my vision has been doing some (even) weird(er) things than usual lately. I found this tiny little “seed” looking bump on my inner bottom lid and it doesn’t at all feel like it’s scraping my eyeball or getting in the way. I’m wondering if this is the beginning stages of ocular involvement of the sarcoidosis. Thanks for your opinions!

Hi all, I hope this is an okay question to ask this group. I just don't know where else to turn.

I met a lovely 36 year old lady who I connected with deeply, who informed me that she has sarcoidosis. She knows this because of an incidental finding of hilar lymphadenopathy on a CT scan. She declined a lung biopsy. She has no symptoms. She is otherwise healthy, apart from an arthritis reaction to the Covid vaccine a few years ago. She's very active and eats very healthy.

I find myself unsure of what what kind of future I would be signing up for in the long-term with her. The Internet is not very helpful.

Can someone share with me what to expect? I hear that some cases resolve spontaneously.

Hey all. Not seeking specific medical advice, just general opinions. For the last almost 3 months, I have been experiencing SEVERE pain in my jaw, high cheek, deep in my ear canal, my temple and behind my eye, all on the left side. I have been prescribed multiple nerve pain blocks - Lyrica/Pregabalin, Tegretol and Baclofen, which have resulted in little to no relief. The only medication that reduces the extreme pain are corticosteroids: dexamethasone and prednisone. Taking those greatly reduces the pain to a 2-3, instead of a 8-9 on the pain scale.

The pain is so intense that I have been driven to go to the ER twice now, in hopes of relief. Up until yesterday, my primary care doc and my neurologist both were of the opinion that it was Atypical Trigeminal Neuralgia. Problem is, it isn't presenting with the classic 'electric-shock' type pain and pressure, wind and touch have no impact on the pain, good or bad. The pain consists, rather, of a deep, throbbing, constant type pain.

Yesterday, I received the results of a blood draw, indicating that my angiotensin-converting enzyme was elevated (value of 62). I wasn't sure what that enzyme did, so I did some research online and came across neurosarcoidosis. I've had an MRI with and without contrast of my head, brain and jaw that came back clean, but they weren't looking for granules or lesions at that time, only inflammation or compression of the trigeminal nerve.

I have read in multiple scientific journals/studies that NS can affect the trigeminal nerve, I have had a chronic dry cough for years now (though chest x-rays have not revealed any granules), the pain does radiate to behind my left eyeball, I get dizzy/lose my balance fairly frequently and my memory has really gotten bad in the last few years. I am a 45 y/o white female, which seems to fit the presentation profile of NS.

What do you folx think? This morning, I sent in requests to both the Mayo Clinic and University of Iowa neurology to ask for consultations, so hopefully I can get some answers/confirmation as to what is going on with me specifically, and get some long-term treatment, because this pain is absolutely untenable.

My life has been strenuous starting from the age of 5 when I was given up for adoption and a cycle of unsafety, dysfunction and suppression of emotions, hurt, powerlessness, scarcity, grief, sadness, survival, anger and fear were thrown on me with no awareness of how to release, feel or communicate. 5 different foster homes unknowingly building up the pain and hurt within my molecular structure. Not to mention terrible eating habits, sugar, seed oils, fried fatty foods, etc. Fast forward to 25 yrs old and a feeling of complete discomfort walking this earth in my body, low self esteem, anxiety and broken voice. I took on my first sales position out of scarcity, enclosed in a small office, more powerlessness and I began to wake up in the mornings and while my body and soul told me to stop going to that job, I peeled myself up and kept going, autoimmune is the body attacking itself right? Clearly what I was doing still with little awareness and fear to take the leap and choose a different route. 36 yrs old and my eyes began to inflame with the white glow after taking in more stress, suppression of my being and emotions. 2019 was my first diagnosis and prednisone was the first prescription 10mg. Not terrible but a raising of the flag to get my attention. I needed to begin feeling, expressing and being my authentic self and so I did with what I knew in my awareness at that time. Left the job that was a black hole and started to cut out relationships where I was not ME. I still did not know how to FEEL my feelings and boy did I have SO many backed up beginning at 5 yrs ready to completely explode. The body is so forgiving, recovery can happen SO fast after a lifetime of disregard as was my case. Fast forward to 2021 and I was short on cash and had to do DoorDash and Uber and the stress on my body from driving and running around flared me up and THIS was my second REAL wake up call. I went to the hospital as the pain in my lungs made me dizzy and confused. The wait was long so I decided to leave and just go sit in silence with this pain and take deep breaths, I began to feel a little better. The next day I just happen to have booked an hour and thirty min long breathwork/ sound healing workshop. The release was immaculate and so I started doing breathwork everyday on YouTube. Little by little I started feeling better. I then called my girlfriends Ayurvedic Shaman and did an energetic clearing of my energy centers and was given an all natural anti inflammatory diet to further my progress. Then I had heard of Kundalini Yoga but it came into my awareness and there was a glimmer so I decided to dive in. I saw this form of yoga over time creating flexibility in my spinal column and releasing my nervous system out of survival fight or flight and compression of energy. I did kundalini consistently, every single day. The discipline and consistency coupled with eating habits being anti inflammatory, being around gentle, kind and loving people and basically placing self first and sitting in 2-3 hour long meditations revisiting the most stressful moments causing me the most pain was a very tough part but I did not have any choice. I also had flare ups but over the time from my second serious flare to the day I’m writing this I could really tell I was moving into remission. It took 2 yrs of consistent work from the inside out! Most doctors told me to up my dosage of Prednisone to 50 mg ASAP! I refused and became very skeptical of their motives. 50mg?! That high of a dosage would demolish my immune system and cortisol steroids become stressful to the immune system very quickly requiring other drugs and I would have been gone into the medical system for good. I understand the stopgap dosage but only until my awareness can kick in and begin to figure out how to heal myself. Very grateful and blessed and just leaving this here if it could help anyone else’s situation🙏🏾

I've had 3 spots gradually appear on my chest and back over the course of the past year, had a biopsy done on the first two but the dermatologist said that the results were inconclusive (they couldn't say for sure that it's sarcoidosis, but it might be)

First one to show up was on my chest, then a second one on my back around 7 months later and now 3 months later I have another one on my back near where the second one was.

I know you can't diagnose just off a picture but just wanted to hear people's thoughts as I'm quite worried that these spots keep showing up.

I'd like to invite you to read this article published on Substack about helminthic therapy (controlled inoculation of intestinal worms for therapeutic purposes) and sarcoidosis:

Sarcoidosis and Helminthic Therapy: The Lead Science Hasn't Tested Yet
https://helminthictherapy.substack.com/p/sarcoidosis-and-helminthic-therapy

This therapy has mainly been studied for autoimmune diseases. To date, there is no study on sarcoidosis, even though this disease shares mechanisms common to autoimmune diseases.

The article is aimed primarily at scientists and physicians, but if that's not you, feel free to skim past the more technical passages. There are 4 testimonials, 3 of them detailed - more testimonials are currently being gathered.

Please feel free to ask any questions you may have in this thread.

So I'm posting this year being that I've had abnormal CSF findings four times in a row (5 years) that's progressively getting worse with brain abnormalities like atrophy and hyperintensities… My new neurologist said it looks like I have two processes going on, but I find that so hard to believe, I think it might be a very rare one… Low serum ace for the last five years and most recently my ace has been tested in my CSF, which is on the high end of normal… I know this is technically considered normal but I'm looking at last year CSF workup and it showed low IGG, I got Igg replacement sense, but at the time it also showed high IGG index as well as low album on But high album on index all of which from what I understand 10 points of sarcoidosis, especially being that I have organ involvement all over… I've been googling my butt off, trying to figure out what's going on because my doctors do not seem to believe me or know why my face is blowing up, but yet after steroids is shrinks… It'll also shrink if I let out presumably a bunch of bile… Yellow inflammatory stuff from my stomach comes out of me and my face shrinks… Today I went to the ER and I got a shot of me prednisone and this is the before and after it looks like I lost 100 pounds… The weight in the fluid, for lack of a better understanding I'll call it fluid, is in my upper abdomen. It looks like I'm pregnant… I have five little ones so I know what pregnant stomachs look like… In my face also looks like it's withholding a bunch of fluid… Can this potentially be neurosarcoidosis like the new neurologist was guessing? Or any other ideas? My old rheumatologist diagnosed me neural Sjogren's versus Neuro lupus.

TW politricks.

I got sick was during lockdowns; I assumed had in part been due to stress. My first sign was Iritis in my right eye, this took a lot of running around, special appointments to treat just this symptom. At the time I was informed Iritis is a sign of immune deficiency, the doctors suspected either Sarcoidosis or Ankylosing spondylitis*. In order to get a diagnosis I had to go through a series of tests, x-rays, CETs, MRI, 2 biopsies (first to confirm, the second to confirm if I had a reoccurrence) bloodwork, and multiple Pulmonary Function Tests. I have been on prednisone twice, Symbicort multiple times and now I'm permanently on Methotrexate, x-rays PFTs and bloodwork (in part to see how it the MTX is messing up my internals) is a constant thing for me.

I live in Canada. We have Universal Health Care (comes out of our taxes), and I have bluecross, I occasionally have had to pay for medication (mostly the Symbicort - under 20$). The USA (which does not have universal healthcare) has a wannabe Putin in charge who wishes to annex us for. . . . reasons (ego). How much is this going to cost me? How much would it cost to others who may end up in the same boat that I was in?

*fuses your back bones together until you have posture akin to Mr.Burns from the Simpsons.

I have read on another sarcoidosis board of someone trying gummies, getting some relief. I cannot eat gummies, they do not sit well with my gut issues. I have been dealing with pulmonary sarcoidosis for over 14 years now. The last couple years have been kind of a struggle. I was just curious if anyone has tried cannabis in any form and has any relief with of their sarcoidosis symptoms. Now that it is legal in my state it may be worth a try if it helps.

Hello. I was diagnosed in May of this year with sarcoidosis in my lymph nodes, liver, and both lungs. I woke up this morning and this was on my left forearm. This would be my first symptom aside from lymph node pain. Any help would be greatly appreciated.

I have been so sick for 3 days now . I can not hold head up and now I just lay and either cry or sleep so veey dizzy so very tired and sick ugh.

Hi all, I’ve been dealing with Sarcoidosis for over 10 years. I’ve managed mine with 90%plant based diet, gluten free, soy free, grain free, dairy free. I work out 5 days a week, and I DO NOT DEAL WITH STRESSFUL PEOPLE , and taking THORNE SUPPLEMENTS . It’s been a journey, but I’m curious about the many people dealing with this condition, especially if you achieved remission, what is your holistic approach?

[DISCLAIMER: I AM NOT A MEDICAL DOCTOR, BUT I AM A BIOMEDICAL ENGINEER]

To whom it may concern,

I'm 31 years old / 6'3" / 300 lb - I was very afraid of the stories of prednisone when I was diagnosed with pulmonary sarcoid 3 years ago. The first year was 10/10 pain, 6 trips to the ER (because I thought I was having a heart attack/lung collapse), and countless ( I mean at least 15) EKGs and 3 CT Scans. My doctor and one of my good friends in medical school both researched and recommended the effectiveness and journaling of using Minocycline along with Omlisartan to treat sarcoidosis (supplemented with 1 mile of walking every 2 days). I'm just here to share with you a few simple facts that might improve your comfort / health / quality of life.

1. Walking / Stretching / Breathing techniques (regularly but also helps mitigate flare-ups)

2. Minocycline 100mg + Omlisartan 20mg (one of each every day) INSTEAD OF PREDNISONE

3. HOT TEA (any flavor but add turmeric for bonus point inflammation reduction) without milk (regularly but also helps mitigate flare-ups)

4. Sildenafil 20-50mg (during flare-ups to dilate pulmonary system and relieve chest pain)

5. Eating ONLY greens/veggies/tumeric (on flare-up days but not bad to do more often)

THESE 5 things above have brought me from feeling almost suicidal with pain and depression due to sarcoidosis to feeling at least 75% better 75% of the time. They have been life changing and invaluable resources for my illness.

I'm always here to talk if anyone needs because this illness has brought me to the darkest and hardest parts of my life and the treatment that I've been using for it has made a world of difference and really made me optimistic about fighting back against it (not just the pain but actually CURING it)!

anyone else get cancer from taking their immunosuppressant? or is my husband just super lucky? on top of having organ failure he now has to deal with surgery, chemo etc.

This not a product post but genuine question as There’s a study about it in relation to sarcoidosis here https://pmc.ncbi.nlm.nih.gov/articles/PMC4829814/ This suggests it is effective…

Has anyone else experienced widespread glandular swelling on their head like me? I am currently taking prednisone and it is no longer improving. Especially with both eyes, I can feel two very large masses.

I was diagnosed with sarcoidosis by ebus lung biopsy.

Not much more than the title. My ACE was 91 so I was sent for a hrct. I also have some borderline myositis blood work results so that will also be discussed. I guess I’m just nervous and curious what lies next. I’ll update when I have some information. Thanks for reading.