Sudden low blood oxygen levels: Anyone else have Vasculitis?

Posted by SusanEllen66 @SusanEllen66, Feb 15, 2022

I suddenly started feeling awful about 2 days ago so I went to urgent care for a COVID test. I had checked my oxygen levels before I went and it was low (90]. The test was negative and the chest X-ray was normal. Things have not improved over the last day or so in fact my O2 level has dipped down to 88 twice. I’m going to see a pulmonologist tomorrow and I am set for a CT scan next week.
I believe that the Vasculitis I have may be the cause because it inflames my arteries. Inflammation of the arteries prevents the oxygen rich blood from nourishing the organs.
Anyone else here have Vasculitis? I have Polyarthritis Nodosa.

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@deb914

Yes I do - I'm currently trying to figure it out - I was only recently diagnosed with a rare type of vasculitis, which can't be treated, and lately I'm noticing my spo2 levels are usually about 90%.... I don't know what I should do about it if anything.... I've had shortness of breath for years, especially since covid....

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@deb914 Have you seen a doctor in these years since you started being short of breath? Do you have a primary doctor? A great place to start would be to make an appointment with your doctor! And figuring out the familial autoimmune component has to start somewhere, so start with you!
Will you call and make an appointment tomorrow?

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@becsbuddy

@deb914 Have you seen a doctor in these years since you started being short of breath? Do you have a primary doctor? A great place to start would be to make an appointment with your doctor! And figuring out the familial autoimmune component has to start somewhere, so start with you!
Will you call and make an appointment tomorrow?

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@becsbuddy Yes, I have seen so many doctors, & certainly plenty of them since becoming breathless. - I've got other rare conditions like ehlers danlos, POTS, chronic migraine, and been unwell since my early 20s - also a doctor partially severed my occipital nerve, which has required a lot of surgeries.
Yes I have a primary doctor who's very good, but he can help me no further The same with my neurologist.
When my Dad was ill, & then my sister, the doctors detected autoimmune involvement, & they keep sending blood samples to expert autoimmune labs, but they say its not one they've come across before (worldwide), although they are finding more autoimmune diseases all the time... so maybe one day they will find it, but until then..... on we plod!! I do suspect the autoimmune component has been active since my illness first began, but I really don't know .
My primary care doctor said he does not know how to stop.me going downhill, all he can do is monitor things - so I don't think much would be achieved by making an appointment with him unfortunately.. Thanks so much for your kind help 🙏 💓

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@siosal

Try a teaching hospital

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@siosal I am under a doctor at one, but....
🤔🙃

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@deb914

@becsbuddy Yes, I have seen so many doctors, & certainly plenty of them since becoming breathless. - I've got other rare conditions like ehlers danlos, POTS, chronic migraine, and been unwell since my early 20s - also a doctor partially severed my occipital nerve, which has required a lot of surgeries.
Yes I have a primary doctor who's very good, but he can help me no further The same with my neurologist.
When my Dad was ill, & then my sister, the doctors detected autoimmune involvement, & they keep sending blood samples to expert autoimmune labs, but they say its not one they've come across before (worldwide), although they are finding more autoimmune diseases all the time... so maybe one day they will find it, but until then..... on we plod!! I do suspect the autoimmune component has been active since my illness first began, but I really don't know .
My primary care doctor said he does not know how to stop.me going downhill, all he can do is monitor things - so I don't think much would be achieved by making an appointment with him unfortunately.. Thanks so much for your kind help 🙏 💓

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@deb914 Are you seeing a rheumatologist? A good one is the best bet for autoimmune diseases.
Is there a good one in your area?

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No I'm not under a rheumatologist. My primary care doctor said there are no good ones in the area 🙁
I have contacted a lot of rheumatologist further frkm home, but they all say I'm beyond their expertise

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@deb914

@siosal I am under a doctor at one, but....
🤔🙃

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Rheumatologist?

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@siosal

What state r u in/

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I'm in UK:(

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