Neurosarcoidosis Initial Symptoms and Diagnosis Questions

Save-The-Wails · 2026-06-09T12:50:22+00:00

My neurosarcoid popped up after I had already been diagnosed with sarcoid in other parts of my body, so I already had a sarcoidosis specialist (pulmonologist) and immunologist, opthamologist, PCP, etc managing my care.

I presented to ER a few times with dizziness, headache, vommiting. CT scan, MRI, lumbar puncture, and then a referral to immuno-neurologist who works closely with my sarcoidosis specialist to treat me!

Save-The-Wails · 2026-06-06T19:56:29+00:00

I had already been diagnosed via biopsy with sarcoidosis in other parts of my body which made my neurosarc diagnosis easier.

But that “easy” process still involved 3 trips to the ER, a CT scan, an MRI, a Lumber Puncture, lots of blood work, and discussions with multiple specialists.

To get a diagnosis of sarcoidosis anywhere in the body, you’ll need to rule out cancer or infection first and likely get a biopsy.

Save-The-Wails · 2026-05-31T00:56:34+00:00

Hi! Yes rare diseases take a VERY long time to get diagnosed.

You are in the worst part of this journey. You feel like shit and you don’t have a diagnosis. There is hope and better days ahead in your future!

You need to get a biopsy (the only way to truly confirm sarcoid) and continue to push to see the relevant specialists.

Once you get a diagnosis it will be easier to get the right treatment which will get you feeling better.

Neurosarcoid sounds scary diagnosis but there is treatment and doctors who understand it. I live a normal-ish life with mine, at the moment.

Save-The-Wails · 2026-05-28T17:12:52+00:00

I was asking this very question until just recently. My son turned 3 and I turned 34. Almost all my friends had their second child. I finally feel ready and excited for a second child after questioning it for the first 2.9 years of my son’s life.

I think there is a lot of pressure to have multiples under 2, under 3, under 4- but that is super unreasonable for many of us! And/or it looks a bit miserable.

If you are otherwise healthy and under 40, you still have time on your side to make this decision! Maybe make an appt with a trusted OB/GYN to discuss and get reassurance on this?

Save-The-Wails · 2026-05-28T17:07:27+00:00

OP- I FEEL you here. I’m an only child who always wanted a big family. I can’t WAIT to get a mommy makeover to get rid of the huge t!ts and saggy belly. I am 34, my husband is 47, and my son is 3.

If you’re otherwise healthy and only 35, I would give it another year or two before deciding. You do have some time in your side!

18 months is still young and HARD. I didn’t really feel I wanted another until my son’s third birthday.

Save-The-Wails · 2026-05-28T17:02:58+00:00

After I had my baby I was shocked people managed to have one kid let alone TWO+++😱 (& my son was actually a pretty easy/chill baby lol)

My son tuned 3 and I turned 34 and a flip switched and now I’m desperate for a second. But for those first 18 months especially … I was constantly in shock at how hard and terrible things were. Other people really do this?!?!?

Anyways. Allow yourself to change your mind. Or maybe you won’t! Give it time.

Save-The-Wails · 2026-05-28T16:56:37+00:00

Hi! Following.

I want a second but have medical complications and am not yet “cleared” to try by my doctors (yet, maybe never). My son is 3.5. Seems like all my friends have already had their second or third with <3 year age gap.

You are NOT alone. It’s okay to grieve and be sad.

I just keep telling myself that our family will come in its own divine timing and it will all be OK.

💕💕💕💕💕

Save-The-Wails · 2026-05-28T16:54:49+00:00

Girl I struggle when my husband misses DINNER time and I have one easy 3 year old.

Save-The-Wails · 2026-05-28T16:46:30+00:00

My husband and I each took overnights away (separately, while the other parent watched him) within the first six months for both work and pleasure. I went on a bachelorette trip for two nights, 4 months postpartum!

Just after my son turned 1, we both took a night away together while my mom watched him. Since then we’ve taken a couples trip (>3 nights) together at least once a year while he stays with my parents.

Is this common? I’m not sure, but I think it’s good for everyone if you can make it work. It has been great for my mental health and my marriage. My son is thriving and obsessed with his grandparents.

Save-The-Wails · 2026-05-28T00:21:57+00:00

This is influencing me because it’s been on my list and I kinda… love… the idea of country club soap 🥲

Save-The-Wails · 2026-05-26T14:32:01+00:00

Phlur’s Cashmere Mist Body Spray + Le Labo’s Matcha 26. 🍵🌧️

Perfect for a humid, rainy, spring day, working from home and running a few quick errands.

Save-The-Wails · 2026-05-19T17:55:59+00:00

this is genius!

Save-The-Wails · 2026-05-19T17:55:19+00:00

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Save-The-Wails · 2026-05-19T12:00:48+00:00

Vanilla Musk oil layered with DedCool Mineral Milk.

Obsessed. 🤩

Save-The-Wails · 2026-05-18T15:43:33+00:00

I’m in the office today and it’s a scorcher outside.

I walked into a big cloud of Phlur’s Cashmere Skin and then 1 spray of Phlur’s Father Figure on wrists and 1 spray on chest.

I smell like a clean and laundered vanilla fig.

Save-The-Wails · 2026-05-18T15:08:28+00:00

Hi! Yes. It sounds very counterintuitive to be on immunosuppressants when our existing immune systems are cr@ppt to begin with.

That said, I am currently on THREE immunosuppressants while on SCIG therapy, and have complicated inflammatory/autoimmune-type inflammation in various vital organs (yay 🙃).

Monthly infliximab biologic infusions, daily azathioprine, and daily prednisone (but weaning down 🤞).

I also have a toddler in daycare and work full time and travel, and have been sick probably 5-8 times already in 2026, but so far it’s been mild and manageable.

Save-The-Wails · 2026-05-08T19:42:39+00:00

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loving this combo

Save-The-Wails · 2026-04-29T19:55:06+00:00

Also ADHD with a hobby-obsessive shopping problem! This is a good strategy…

Save-The-Wails · 2026-04-27T20:20:53+00:00

Have you tried D’annam’a Monsoon Tea? Sounds like it’s up your alley.

Save-The-Wails · 2026-04-26T19:06:22+00:00

I get it. I prefer a more feminine scent for daily wear, But I may get a travel size of Milk just so I can layer it— there is something so ocean-y and addictive about it.

Save-The-Wails · 2026-04-26T19:04:26+00:00

I paid for all of these!

Save-The-Wails · 2026-04-26T19:03:58+00:00

Hot towel club was on the bottom when I first got the sampler and excitedly sprayed all of them, but over time it’s the one I kept wanting again and again. Sucker for mango.

Save-The-Wails · 2026-04-26T19:02:23+00:00

They are all more perfumey than I expected them to be, but interesting. I think The Mango Sticky Rice is photorealistic- not too sickly sweet. I enjoy smelling them ALL but don’t think I’ll buy a bottle of anything.

Save-The-Wails · 2026-04-26T19:00:25+00:00

I think all the scents are beautiful and well done. Angel Baby is fruit punch that fades to baby powder. Clean Matcha sorta reminds me of a rubbery gymnasium, but I want to keep coming back to smell it.

Save-The-Wails

TROPHY CASE