u/Ok_Champion8801

Hi, so I‘ve been wondering if there are other people like me here. I have a suspected late onset remethylation dissorder also sometimes called dissorder of intracelular cobalamin metabolism. Although I do relate to a lot of people with more comon causes of b12 deficancy, my story is quite a bit different nonetheless. I feel a bit lonely with it, and I‘d just like to find people with a similar story to relate to.

Here is my story, I‘ll try to keep it short. I started experiencing symptoms as a child. At age 5-6 I could feel my energy resources very slowly decline, I was a very energetic child, and it was really subte at first, it wasn’t until age 11 where it started to really affect me. Also at age 7 I was diagnosed with slight hearing loss of high pitched sound of then unkown causes, I also have tinitus. At age 8 I experienced pem for the first time, just like someone with me/cfs would, but it was very mild then. I also started developing migranes at that point in time. My immunsystem stopped working properly too, and I got sick a lot, people accused me of facking being sick so much. By my early teenage years it basically looked like mild me/cfs and migranes. At age 13 I started supplementing b12 with cyanocobalamin at very low doses, as I decided to become vegan. I got regular serum b12 checks throughout the years and my levels were always very good. Something I didn’t realize then but makes sense now is, that shortly after starting the supplement my migranes dissapeared and my mouth ulcers, which I had started developing aswell, dissapeared too. I had no idea then it was b12 related. As the years went on tho my me/cfs type symptoms got worse and worse, I felt as if my body was falling apart on a cellular level. At age 14 the typical vision symptoms slowly started creeping in. Before I started injections last October at age 23, these visual symptoms were exactly the ones someone with MS would have. Now they mostly are gone, except for my night vision loss. But back to when I was a teen, I struggled a lot due to a lack of energy and weak muscles and slowly worsening POTS symptoms (I have HSD and POTS, but the b12 issues made my POTS worse). School was getting more and more difficult, bc of this, at age 18 I then clearly saw my night vision being affected and my cognition declining more and more. It felt a bit like demetia. I‘ll skip ahead a little bit now, but by age 23 last summer I realised that soon I was going to be bedbound. I was having pem so bad, and also the neuropathy and all other symptons were so much worse too. I truly thought I had me/cfs and MS. Btw at age 22 the neuropathy slowly started in my feet, but by age 23 it was in my hands and face too. I also had developed ataxia at somepoint, bc I was having gait issues, fine motor skill issues, and balance problems and stuff like that. Especially at night, I would stomp a lot while walking and feel very unsteady.

By September 2025 I figured out by chance, that I probably have this disease. It would be too complicated to explain, but I started treatment right away on my own. Althogh I did wait with injections until October, bc I was too much of a chicken at first, I used sublinguals instead. Also cyanocobalamin barely works for me. Plus I got wake up symptoms really really bad, and had to go very slow in the begining. I‘ve explained my regime in this coment here before: https://www.reddit.com/r/B12_Deficiency/s/sj2Kszrowg

I finally got to see a metabolic specialist, ealier this month, who is also a researcher and is experienced with such dissorders, and she too belives that this is the most likely explanation, but I am currently in the diagnistic process, and that‘ll take a while before I know for sure what it is. I had to fight really hard to get to see her as no one was beliving me, I‘m just so glad now, I‘m her patient. I‘ve improved quite a lot with treatment, but idk how much I can still further improve, only time will tell I guess. Also I decline fairly quickly without treatment, like I end up bed bound again at some point, just so you can see how bad this really is, I also need injections every 2-3 days, with all the cofactors.

Please feel free to ask me any questions if something wasn‘t clear enough, and if you have a similar story please share it, I‘d love to meet people with a similar experience, as I feel pretty alone in this.

Also here are two papers that I really like, explaining this disease:

https://www.ncbi.nlm.nih.gov/books/NBK1328/

https://www.zora.uzh.ch/server/api/core/bitstreams/b3a5c8b9-85df-4509-8eb5-262641e5023f/content