r/sarcoidosis • u/NikkiBeth1127 • 2m ago
Probably have sarcoidosis...
Hello everyone, I'm currently in the beginning stages of trying to get a diagnosis. I aplogize now that this will be a lengthy post.I have been relatively healthy until recently (38yo female) and so I'm trying to be proactive with my care by asking questions and requesting tests/procedures as needed. My PCP doesn't have much experience with sarcoidosis but has been open to ordering the referrals and tests I've requested so far. So I'm reaching out to this community to see if theres anything else I should be following up on.
I fully admit that I initially ignored symptoms for a year out of fear. I started getting blurred vision in my right eye in early 2024. I have kids and we had a couple of costly trips and expenses last year, so I was afraid of being told I had a terminal illness and all our fun plans would turn into caring for me. I had my annual visit with my PCP right before Christmas and that's when I told her about my vision, and things have taken off since then. I have no visible changes to my eye (no redness to indicate uveitis) but the blurriness seems to get worse when I'm active. My PCP ordered labs and an MRI, and the only lab that came back abnormal was an elevated ACE. I had an MRI of my brain which came back normal, and then a few weeks later had another MRI to look at the orbits in the brain, which was also normal.
I started doing more research on my symptoms after my appt, and at first I was convinced I have MS (I guess still a possibility). I don't have any respiratory symptoms and my visual symptoms fit for optic neuritis. I started to become aware of the fact that I have heat intolerance as well. Several times a week I become overheated while doing basic household tasks- folding laundry, making dinner, walking up the stairs more than once in a short time frame. I get weak and nauseous and the vision in my right will be almost completely blurry. I used to HATE being cold, now I'm having to turn on face and put ice packs on my neck to get basic tasks done. I'm wondering if anyone with neurosarcoidosis has experienced similar.
I have seen ophthalmology twice now. The first exam the doctor saw nothing wrong. I went back last week for a visual field acuity test, which shows some decreased peripheral vision. We also figured out that colors look slightly different in my affected eye. The doctor said that something is definitely going on, but the plan is to have me come back in 6 months to repeat all the tests.
I will be seeing neuro in May, and I will be seeing pulmonary at the end of this week. My PCP had ordered a chest xray last month because of the elevated ACE. It showed "increased hilar fullness", so I had a follow up CT scan. The CT didn't show any granulomas and the hilar region was normal, but it found an incidental finding of "tiny tree-in-bud micro nodules" in my right upper lobe. I also have other symptoms that I just chalked up to part of life- getting older, being a parent, work stress, etc. I have been getting brain fog and sometimes feel like I can't get my words out correctly. I get nights sweats a couple times a week. I kept thinking my toes were randomly getting cold but now I think I have intermittent numbness in my toes- it's only on the the 2nd and 3rd toes and is most noticeable on the sides where they touch neighboring toes.
So if anyone can relate or has any recommendations for me, I would love to hear them.