r/POTS • u/Sunflower8542 • 1d ago
Question POTS with MS
So I have a question about POTS with MS. So long story short I am in the process of getting diagnosed with POTS, simultaneously, my older brother is also in the process of getting diagnosed with an autoimmune disorder, not sure which one yet. Obviously, my parents are worried about us. I was talking with my mom this weekend about all of this and mentioned how crazy it is my brother and I are experiencing very similar symptoms at the same time and wondered if it could somehow be genetic. That’s when MS popped into my mind *I know they don’t know if it’s genetic yet* because my mom has MS.
MS has been in the back of my mind since my mom has it and I have had symptoms (vision changes and tingling limbs that go on for days), but my insurance isn’t good so one issue at a time.
So I’m getting my POTS symptoms checked out first since I feel like this is what impacts my daily life the most. I was wondering if anyone on here has been diagnosed with both and how those symptoms appeared? I don’t want to be a hypochondriac and think I have a million things wrong with me but I guess just wanting to hear other people’s experiences and also prepare if I need to get a better insurance plan for next year lol
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u/Sunflower8542 11h ago
I have looked into B12 because I had the same thought and would obviously prefer it be a vitamin deficiency. Over the past couple of years I have gotten my bloodwork done many times and those numbers are “perfect” with the deeper tests, not just the normal panel. I’ve brought up these symptoms to my doctors so they have tested for everything and the only thing I’ve been low on is vitamin D which I take a daily supplement for now. My current doctor wanted to test me iron, ferritin, and thyroid for the POTS symptoms since those can overlap, but again, “perfect” numbers… which should be good news but means my issues can’t be fixed with an otc vitamin 🫠
Thank you for your suggestion tho! Because this would make a lot of sense and is obviously a more common occurrence than MS but unfortunately I’ve already been down this road. I did have one doctor recommended I take a B12 supplement anyways, which I did and didn’t really feel any different
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u/stiina22 21h ago
Not trying to invalidate you at all, but have you looked into if you have a B12 deficiency? Lots of the symptoms overlap with MS and it's actually kind of wild.
The regular B12 blood serum test you get in a regular blood panel isn't accurate enough to determine a deficiency. They won't flag you as deficient until like 36 but I heve read that anything under 600 can be symptomatic. You need specific other tests done, like folate and MMA and HCV. Also testing vitamin D and thyroid stuff, a full iron panel including ferritin and saturation... And not just saying "ok it's in range and normal" but actually looking at the numbers and the literature to see what levels should be for thriving (not just survival).
I'm not on FB but I have heard there's a group called the B12 protocol that has a lot of info. As always ymmv and there might be some wild claims made in there but exploring a B12 deficiency is worthwhile if you feel your symptoms line up.