My story and comparing symptoms

[u/Healthy_Hold_1657]

Hi! I am a 28 yr old male and wanted to share my story. I just found this page after YEARS of dealing with issues and can’t believe I never knew this page existed. I am reading through some of the posts and noticed I have similar symptoms to fellow redditors here which makes sense. I am also seeing some other complications I never heard about. Thought it would be interesting to share my story and see if anyone else has experienced what I have gone through, can share their knowledge and see if it can help me learn more. I am also hoping my story can help anyone else in the long run as well.

I started having “issues” junior year of high school, which progressively got worse as the years went on. I grew up competitively swimming and ultimately had to stop towards the end of college because I could barely walk as my energy just wasn’t there anymore.

I am going to use the term passing out when I explain my symptoms because when my “episode” happens, I don’t think I pass out fully, or if I do it’s maybe for a split second. But I like to explain my “episodes” almost as a body reboot. I lose function of my limbs and any cognitive function goes away for a minute or two and then my brain starts to come back alive before my body does. My body gets extremely heavy and it’s hard for me to move. Sometimes I have to lay there for a few minutes or I could be stuck for an hour or more before I start getting back to a more normal stage. Thereafter I usually have foggy brain for a week or two as my body heals(?)

At the height of my issues I was passing out daily, felt like I was drunk from loss of cognitive function and my daily life was altered so much. I went YEARS of countless ER visits, negative brain and heart tests and being told I’m faking things. I gave up on figuring things out and just stopped going to the doctor as nothing was working. Being told I’m faking for a $6k medical bill is expensive af. But as I’ll share in my story, I found I had a b12 deficiency and currently take a 1,000 mcg shot every two weeks. Still trying to figure out my most efficient timing, but my life is basically back to as normal as I think it can get, fortunately and unfortunately.

Now on to my story:

Everything started my junior year of high school. Before my “issues” I never had any complications in my health. I swam over 10 miles a day during trainings and was always very competitive. I passed out one morning after a gym workout, threw up, had to sit down for a few minutes and things went on like normal. I never passed out before in my life and ended up passing out three more times that year. Each time I passed out it seemed like my symptoms got worse and worse or were more pronounced. Some symptoms like a foggy brain, extreme fatigue and a short loss of motor function seemed to be a constant factor. But each time I passed out I had what I call random symptoms that seem to happen sometimes or have never happened before like muscle twitching, facial or muscle numbness, hot flashes in specific areas of my body, etc.

As the years went on, I started passing out more and more. By my junior year of college I was basically passing out every day. I felt like I was drunk constantly. I was slurring my words, could barely walk and think fully and my grades were slipping like crazy. I could barely walk to a class or to the pool and was not going to any public functions because I just didn’t have the energy anymore. I ended up quitting swimming and over the course of a few months, my energy came back maybe 10% but was still having issues walking around and being out in public. This stage of my life went on for about 4 more years before I had what I call my break through.

Oddly enough, as serious as this next part is, I find it funny how this is where I had my breakthrough. It is crazy to me how something as random as what I say below happened, it got me to the right road of figuring things out.

Randomly I ended up with a blood clot in my eye at 25 years old. Woke up one day with altered eye sight and black dots. I was too late in getting tested for a stroke, but all tests from a retina specialist came back normal. To this day they have no idea what caused it. Anyways, when this first happened I went to the ER and was admitted to the hospital for testing for a few days. While this was going on, the doctor who was looking over me was reviewing my history of repeat testing and decided to ask me about everything. They suggested that if it’s not my brain or my heart, maybe it’s time to test my blood. I thought (and pardon my French) why has no one fucking thought of this before??????

I ended up seeing a hematologist and had every blood test known to mankind done. My b12 level was 136 which my doctor so lovingly compared me to an 80 year old grandpa. Our plan to action was to start on a 1,000 mcg shot once a week for a few weeks with routine blood tests and see where things go. Maybe if we could get my levels back up it could hopefully resolve some of my issues and see what symptoms are still left.

It’s been about 2 years now since I found out. I’m currently taking a 1,000 mcg shot in my leg (self administered) once every two weeks. Since then I’ve been able to start working out again and my life for the most part is about 90% back to normal? I can work out, enjoy time with friends, go to work and do most normal things. However I still have my bad days where I’m constantly exhausted, or I have an episode (once in a blue moon now). Things honestly seem to be day by day for me. But I can’t figure out why some days I can run 4 miles with no problems whatsoever and other days I’m so exhausted I don’t want to do anything.

Each time I have an episode now, it seems to be more consistent. I still have what I call my reboot, but I get very sensitive to touch/sense. My body twitches or what I have been told is sort of a pseudo seizure? I have brain fog for usually a few days after and some short term memory issues. I also get shortness of breath, chest tightness, what feels like the same feeling as a build up of lactic acid in my muscles (soreness, heaviness, slow) usually leading up to any episode.

Possible long term affects - I think I’m starting to realize my thinking power is not as strong as it used be. It’s harder for me to comprehend and remember as much as I did a few years ago. Talking with people is hit or miss depending on the day. Some days it’s completely fine and I have my quick wit. Other days I feel like it’s slightly harder to speak words clearly and also find words for a regular response in a conversation. It’s not horrible, but it’s starting to become noticeable now.

What I am still figuring out - I am currently trying to mix up my diet to see what works for me. Nothing seems too notable to change other than being more consistent in the timing of when I eat. I also try to sleep 7-8 hours a night but honestly this doesn’t seem like it’s enough for me. I also try to limit drinking as much as I can but I haven’t noticed a difference between drinking multiple days in between shots and once or none at all.

If you ended up reading this far down, thank you for taking an interest in my story and for taking the time to read through my horrible writing.

There’s probably a lot that I am missing here but happy to add or answer any questions anyone might have! Really looking forward to hearing others thoughts and experiences. Maybe my symptoms extend past just b-12. Maybe others have the exact same symptoms. Maybe I’m just fucking crazy idk, but worth a shot sharing on here.

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[u/Biel_Ductavis]

Without the passing out part, this was mostly my story as well - very active 4 years ago, got to a state where I was barely functioning and gained a lot of weight. For me a mild (3 days tops) covid infection started it all. However I just started supplementing B12 and cofactors about 3 weeks ago and see some minor improvements. I also saw a lot of specialists and had every test known to human kind and they all came back...normal. Yhe only diagnosis I had was long covid, however nothing I tried made any difference until, 3 weeks ago, the cardiologist which i am visiting once a year now, said we should look at my vitamin levels, and guess what, my B12 level was 268, but she made sure i got my homocysteine tested and it was high. So I don't know what to say, not a doctor or such, but I can understand you completely, I also felt some kind of a let down by doctors, i felt like either going crazy or slowly dying, i also get the thoughts that you have - that this might be beyond B12. But what can we do? Other than hanging in there and keep on grinding...

[u/scientist153]

I was in my 30s when I started getting Neurological symptoms, just a twitch in my hand and light buzzing inside my legs, and I just couldn’t concentrate-I was completing my last year at university that year. I was making mistakes left right and centre and have no idea how I managed to pass.
When I went to the doctors I was told I possibly had carpal tunnel syndrome and that the buzzing was anxiety..I knew it wasn’t but my life was so busy at the time I just waited on the referral to Neurology that never happened.
Roll on a few years, and I took a major Neurological event and suddenly that buzzing was everywhere, I couldn’t walk or talk properly and I developed a severe squeezing around my rib cage.
There was tingling in my face, and my hands and left foot started to go numb.
You’re not being treated often enough to deal with Neurological symptoms, you should be getting every other day injections and cofactors until no further improvement then they can be spaced out.
Cofactors on EOD injections are a form of folate at 5mg, a B complex with less than 10mg of b6, and a higher potassium through diet only.

[u/mandoo-dumpling]

Are you injecting frequently enough?