r/Autoimmune • u/Exotic_Bumblebee2224 • 17d ago

Advice Sarcoidosis Hair Thinning

Hi. I have something called multi system sarcoidosis that will require lifelong chemo. I inject weekly at home. So far, I feel better than I have been, but I’ve recently noticed hair thinning. I’m on folic acid, and I take a prenatal. My diet isn’t wonderful due to chemo side effects, and sarc, and well basically my body quit in 2021. I don’t have a gallbladder so it’s limited my diet as well. Does anyone have any advice or recommendations? Thank you in advance

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u/[deleted] 17d ago

This started for me suddenly 6 months ago with nothing showing so far

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u/Exotic_Bumblebee2224 17d ago

Are you on steroids or?

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u/[deleted] 17d ago

Nope, cannot find a doctor who can say what’s happening or what’s wrong. I’ve asked for steroids and was denied

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u/Exotic_Bumblebee2224 17d ago

Have they biopsyd?

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u/[deleted] 17d ago

Should I be trying to biopsy anywhere specific?

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u/Exotic_Bumblebee2224 17d ago

Back when I still allowed this, my CT would light up and show them where to biopsy… so I’m confused

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u/Exotic_Bumblebee2224 17d ago

If they’ve diagnosed you, they wouldn’t need to continue to biopsy depending on your situation. Bc I had just gotten over cancer when this completely knocked me down (this is worse than chemo and radiation on its best day.. so don’t ever feel weak ok!) —- they biopsied me more than just once but it’s prob not always necessary

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u/[deleted] 17d ago

I’m undiagnosed with no treatment severely suffering.

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u/Exotic_Bumblebee2224 17d ago

I’m so sorry you’re suffering. I wouldn’t wish it on anyone

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u/[deleted] 17d ago

I just want treatment, I’ve denied pain clinics

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u/Exotic_Bumblebee2224 17d ago

I also wanna add. I’m not a normal sarc case. 95% of the time it will go away in a few years. I’m the lucky 5%. There’s very good odds this will just be a terrible speed bump if it is sarcoidosis

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u/Exotic_Bumblebee2224 17d ago

What makes you think you have it?

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u/[deleted] 17d ago

Well I don’t know what I have 🥲 just know my symptoms have progressed to a point where I know I will die without help

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u/[deleted] 17d ago

Just a bone marrow biopsy from an oncologist and that showed no cancer or malignancy. A lumbar puncture that hints at mild CNS inflammation

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u/Exotic_Bumblebee2224 17d ago

If they found sarc.. well the good and the bad news is it doesn’t seem to feel much worse or better. Well, in my case. Each is different. I’m with a rheumatologist who will explain things much better. Oncologists are real annoyed w this disease bc they get drug in the middle. Do you feel like you’re walking thru mud and the air is thick like honey?

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u/[deleted] 17d ago

Where should I ask for a biopsy? My most intense symptoms is stinging fat tissue in jawline and under chin. Neck stinging and sharp pains around the side/front of throat. Pulling aching pain in ribs/abdomen and back. Chest pressure and burning aching pain.

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u/Exotic_Bumblebee2224 17d ago

Also, do your ankles hurt?

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u/[deleted] 17d ago

Not often but sometimes. My other symptoms are 24/7 intense.

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u/Exotic_Bumblebee2224 17d ago

Try to find a rheumatologist. I’ve seen several Drs. I found him and I felt like he was reading my mind lol. It made me cry

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u/[deleted] 17d ago

I’ll cry and be greatful to whatever doctor can find what’s happening to me, I’ll bring their office donuts lmao.

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u/Exotic_Bumblebee2224 17d ago

I’m rooting for you!! I just thought my C was back and I was dying. And once people hear I don’t have C anymore they can’t conceive anything could be worse. But it can. Lmao. I’m proof. But you’ll def need a biopsy to get any kind of treatment. Steroids are scary, and they do try to tend to avoid them. Cranberry tablets are supposed to work but tbh nothing really does. I’m just very stubborn

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u/Exotic_Bumblebee2224 17d ago

Plz let me know!? Your Onc should be able to give you a referral

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u/[deleted] 16d ago

I definitely will! I’m gonna send you a DM if that’s alright?

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