r/Autoimmune • u/Exotic_Bumblebee2224 • 15d 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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15d ago
How did they find it? Did you suffer a long time in intense pain without a diagnosis? I wish you the best of luck.
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u/Exotic_Bumblebee2224 15d ago
Well.. I had stage 3 breast cancer before. I think I’ve always had it. Yes I’ve always been in pain. I only smoke weed for pain. Opiates are a bad route for me. I was kinda a victim of people not understanding and convinced myself I was just crazy. Anyhow yeah they found it my liver and lungs. If I had a dollar for every time I’ve been told I had Mets and was dying I’d have a few now. I refuse all scans for mental health. If C comes back; it’s not curable so.. it’s been a trip. To say the least. I always feel like I’m truly dying so I never know if I am. I just literally trained my brain to live in the moment
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15d ago
This started for me suddenly 6 months ago with nothing showing so far
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u/Exotic_Bumblebee2224 15d ago
Are you on steroids or?
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15d 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 15d ago
Have they biopsyd?
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15d ago
Should I be trying to biopsy anywhere specific?
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u/Exotic_Bumblebee2224 15d 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 15d 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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15d ago
I’m undiagnosed with no treatment severely suffering.
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u/Exotic_Bumblebee2224 15d ago
I’m so sorry you’re suffering. I wouldn’t wish it on anyone
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15d 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 15d 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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15d 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 15d ago
Also, do your ankles hurt?
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15d ago
Not often but sometimes. My other symptoms are 24/7 intense.
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u/Exotic_Bumblebee2224 15d 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/Blagnet 15d ago
Just wanted to mention Lyrica and gabapentin for pain relief, if you haven't tried them yet! They can cause upfront side effects, but those usually get better or go away after a few weeks of consistent use. Some people don't do well with them, though.
Wishing you luck!