I’m so happy to have found this website as I have been left alone to deal with what I highly suspect as neurological symptoms and nerve damage cause by severe B12 deficiency. My neurological symptoms are muscle twitches and I feel sometimes crawling under my skin in my calves etc.
I live in Finland, which like the UK also doesn’t sell b12 injections over the counter and the doctors seem to be absolutely useless in this field. And so after over a year of suffering from neurological symptoms and trying to figure out what was wrong with me (I was diagnosed with iron deficiency which is now fixed) I finally ordered the injections from the German pharmacy and started injecting (luckily I found a pharmacy near my house where they have a service where nurses can give the injections) about two months ago. And after three injections for the first time since this nightmare started- my symptoms disappeared! I felt like my muscles relaxed for the first time in about 1,5 years. It was incredible and I was convinced it truly was all caused by b12 deficiency.
I took the 7 loading injections (on alternating days) and felt amazing. I really thought the nightmare was over. And so I took a week break and then was going to go two weeks without an injection but about maybe after a week the symptoms re appeared. And so I have been now taking an injection once a week. However, I’m wondering if it’s enough because my neurological symptoms are back. I have some symptoms every day (even if milder than they were pre injections) and also now I noticed about three weeks ago that I’m feeling a weird tingling/irritation/prickly feeling on my left cheeks. And I’ve noticed it every day now and some days it’s pretty bad and it worries me. I’m worried because it’s a new symptom. And because I have been treating myself without a doctor who could advise me. Can this face symptom be a side effect of the injections?? Or is it caused by the deficiency? I never had this before.
Another thing I’ve been reading is that people who have neurological symptoms are injecting every other day for as long as they feel the need to (one girl wrote in another group that she did it for a year). I need to just hear confirmation that this is safe for sure and that there can be no harm in injecting that frequently?
I’m in between questions of should I pause the injections now due to my face symptom and see if it’s gets better or should I just inject more to see if it gets better? I’m so scared.
I would also love to hear from other people who have neurological symptoms and what your journey was. I’ve heard it can’t get worse until it gets better. But how long /what does it mean ?
Thank you so much for any advice. I have a appointment to a neurologist this Tuesday finally, but my hopes are quite low as all the doctors who have been treating me over this past 1,5 years have not known anything about B12 deficiency and just stared at the lab results even when I was trying to tell them that I have been taking high dosages of B12 supplements orally every day because I didn’t know I should not take it before the lab tests and when I learned that, my symptoms had already started at that point so I was reluctant to get off them for the 4months. (I have very low B12 lab results that I found in my medical chart from 2018 and the doctor never warned me. She just asked if I was using a supplement and I told her I was and that was it- and I was even using a supplement during those lab tests so my levels have been even lower in reality 😔)