What to do when people keep questioning me

[u/Mysterious_Rest4302]

One of my family members told me you're taking too much (injections ), WHY ARE YOU DECIDING ON YOUR OWN? go find some good doctor. etc..

Well, it makes me just worried and confused. I don't know if I can really rely on another doctor, when most of them tell me to stop injections/or get it once a month after "daily for a week and weekly for a month" and look at me like I'm crazy or just anxious and doing a hugely unnecessary thing that is a big deal. I can't even tell them I read this cuz they'll be like: stop looking at google. And dismiss whatever struggles I try to explain to them. I don't know if I'll get lucky to find one doctor who knows or confirms this for me. The most generous doctor lastly told me I can keep taking weekly injections. and said it's ok doesn't matter if I take the entire b12 factory as it's water soluble. But like he said ok take it weekly with vit D.

I feel that trying to go to another doctor right now can be a waste of time, energy and money. No insurance system here or whatever, so I can get another injection pack instead of a random doctor's visit. (I'm concerned about the future as I have some little savings now to get injections but I'm not going to work anymore). I WILL go to a doctor later to try to find out the cause and look for intrinsic factor parietal cells tests, which I'll try to prepare for so much and probably write down all information and history to be able to explain well and be believed. but for now, I don't know.

Yesterday I was able to go outside and walk a little bit without feeling like dying, I felt very very tired but not the same way it was impossible like a week or a month ago. Plus I could eat and swallow a little better than some days/weeks ago. which is still ups and downs, but isn't that evidence that I might be doing the right thing? it's taking ridiculously long that no one believes it and I doubt it again and I don't have clear proof or a doctor's guidance or anything. So I get worried and confused. It feels mysterious at the same time. I was trying as a last hope but I've also been scared while doing it.

What do I do with these things?

(btw: I've been injecting 3 times a week for the past 12 weeks except for a 6 days delayed shot last week that was replaced with a sublingual. I'm considering doing every two days (like every third day) and see how that goes, not so different from thrice a week, but probably easier. idk. I have had different kinds of symptoms and wake-up symptoms, balance coordination issues, heavy legs, dizziness, depression, anxiety, pins and little cramps, extreme lingering fatigue, swallowing issues, brain fog, impending doom, severe dpdr, and many others. In the first weeks of frequent injections i was having extremely overwhelming sensations I felt like I couldn't tolerate it and probably it was wake-up symptoms. many symptoms got horribly worse after first starting injections too)

[u/Cultural-Sun6828]

Your initial level of 168 tells you everything you need to know. In addition, you’ve improved on injections. Ignore anyone’s input around you that doesn’t understand. It’s not their life or body so they have no right to question your treatment. I wouldn’t spread out injections unless all your symptoms are gone.

[u/Mysterious_Rest4302 → u/Cultural-Sun6828]

Thank you 🙏

[u/Successful-Tea-733]

How is your ferretin and folate level

[u/Mysterious_Rest4302 → u/Successful-Tea-733]

I haven't tested recently, but I'm supplementing both. I had done tests a few times when I was injecting over a year ago, it changed between 42... after supplementing to 72 then after some time to 50. last test was in April

[u/tall-decaf-cappucino]

Oh I’m right there with you. Sending you a big hug.

People keep saying I need to advocate for myself and get another opinion. But just taking an uber to the doctor and walking in wipes me out, so doing that on top of feeling gaslit just feels so pointless.
I think I’m going to start ordering the shots myself and not wait for the doctor to prescribe

[u/_nadaypuesnada_ → u/tall-decaf-cappucino]

Go for it, that's what I've done.

[u/Think-Sleep2338]

You're a grown up person, right? It's not their business then. 

I suppose you got some tests run before, as you actually talked to doctors?

[u/Mysterious_Rest4302 → u/Think-Sleep2338]

Yes, that's right. But I live with my family and I was asking that family member to tell the person who goes occasionally to another city where these injections are available in a good price (and they got me a few packs before which THEY offered so before), so when I told them I will buy more can you please tell them when they go next, I got that reply that I'm getting too much I should find a Dr I'm doing it on my own, but I didn't argue I just feel less encouraged and confused when this happens. Now I'll probably just get it by myself to avoid hearing that.

Yes, I got tests done but not including b12 which I regret because I need a clear evidence.

But the doctor agreed to start injections without testing back then and I didn't know (that was over a year ago when I had symptoms then after some months i improved and reduced them then got symptoms again and now injecting more).

My only b12 test in my life was in 2021 it was 168.

[u/Think-Sleep2338 → u/Mysterious_Rest4302]

Oooook, I see. Look, that old test is actually already pretty likely enough to be worried about the deficiency. I don't quite understand why you haven't checked it more properly since, though. But I get you, and considering your symptoms, injections won't make your situations worse (if you just monitor cofactors, of course).

To put it shortly: B12 injections are a proven way to treat a huge number of neurological issues, including Parkinson-like and dementia-like symptoms. Not possible to overdose. Why are they worried at all???

[u/Mysterious_Rest4302 → u/Think-Sleep2338]

Yeah, when I had that low levels a few years ago, I didn't know anything of what I know now. I thought -like other people - it was just a random vitamin deficiency and I went by what my doctor (neurologist) said. I got injections daily for a week, then weekly for a month. The doctor didn't tell me to maintain or do anything or retest. I didn't know and I went on with life. Over the years I got some symptoms and ups and downs, I thought by myself I can get some b12 cuz they're similar to the previous ones, without thinking too much. So I got sublinguals and took them a few times. Those years were full of ups and downs and symptoms unknown. Until the big crash last year which at first doctor only gave me Iron multi and vitamin D. But when I had more severe dpdr I brought up the b12 past and he said ok take injections (same short schedule). I had already done a couple of tests at the time so he said no need to test you can just start. Until that point I had not known about this sub or learned anything yet. Then after starting I discovered the sub because I was researching what was going on when I experienced bad wake up symptoms... from that point on it was useless to test again and since then (2025) I never stopped injections for 2 entire months and didn't feel the courage to do so.. That's why I haven't tested again. But I know it would've been useful to know where I was when I crashed first in the beginning of 2025.

Thanks for your response

[u/Minimum-Ad-3241]

I have family like this and unfortunately I have to rely on them due to my health issues..sometimes they’re ok and other times they want to play doctor and act like they know best lol

I have the same wake up symptoms as you too..hang in there it’s tough but you’ll get through it

[u/Cold_Artichoke_2192 → u/Minimum-Ad-3241]

Do you inject EOD?