Can’t concentrate and understand

[Gunj_redjem]

17 month on a treatment, still unable to concentrate ,can’t understand what one says brain doesn’t work apart from forgetting,tremors and other neurological damage...can any one tell who has over come this difficulty of concentrating and difficulty understanding what one is saying TIA

[Hidden]

Are you having injections and if so how often?

Official NICE guidelines are alternate day injections until no further improvement, also you will need to take cofactors, most importantly folate, 5mg daily if injecting alternate days or more frequent - I am two years in and still injecting daily, everyone is different and some need more frequent injections than others.

[Gunj_redjem in reply to Hidden]

EOD SI doesn’t suit me I feel dizzy,nauseated, awful, so I take twice a week though that is also too much for me, should I be taking Folic acid as my folate is already above range?and will this symptom ever sort to concentrate?

[Hidden in reply to Gunj_redjem]

Sorry I couldn’t make out whether you are getting injections or taking tablets?

Folate is necessary for the B12 to work, I believe it’s best in the upper quarter range but opinion differs from forum to forum so I just keep with the 5mg daily.

As far as concentrating goes it depends... I can focus on things I’m interested in but through my B12 research I learned more about ADHD and realise I was trying to concentrate on probably the wrong things before which made me ill so now I’m just concentrating on the things I want to and moulding my life around those instead

[Gunj_redjem in reply to Hidden]

I inject twice a week...but skeptical about folate as my levels r too high for Folic acid

[Hidden in reply to Gunj_redjem]

I’m not aware of issues with it not working because it’s too high - for a while during my recovery process I was up to 10 or 15mg daily which is therapeutic usage amounts for a number of mental health issues I read.

[pvanderaa]

At my worst, I felt completely hopeless. I lost my spatial awareness of where sounds were coming from. It was like I didn’t hear in stereo and everything was monophonic.

My brain felt completely overwhelmed as it couldn’t isolate noises from other sounds. I tried to isolate myself all the time. I think it also got worse after I started on B12 injections (hydroxo).

By monitoring my symptoms with a logbook, I found the regime of supplements that worked for me. I also figured out that gluten and dairy were contributing to my symptoms and after I eliminated them from my diet as well as MSG, soya and natural flavor.

My diet became very restricted but my head cleared up. Short term memory loss disappeared. My hearing restored to stereophonic. This was several years after I was on injections.

It continued to improve and other aging symptoms have showed up.

After several years, I noticed from my logbook that symptoms had disappeared. I couldn’t say exactly when they disappeared but one by one that have gone.

I’ve been on injections, now weekly cyano, for 8 years and things are stable. I’ve recognized that nerve damage in my hip will never get better. I’ll never go on long walks but I can swim and do short walks for exercise.

I feel very lucky that my B12D was caught before things got even worse and I’ve been able to recover.

To heal the nerve damage you have to exercise it, including the brain. You have to figure out what works for you. Sleeping all the time doesn’t do this. So I encourage you to keep trying to stimulate your brain and muscles to trigger nerve repair.

[Gunj_redjem in reply to pvanderaa]

8yrs of treatment how much time it took to resolve your major symptoms!

[Alfabeta in reply to Gunj_redjem]

Before I was diagnosed I had nominal aphasia, little short term memory and balance problems. I had blurred long and short term vision, tinnitus and auditory hallucinations. I had small fibre neuropathy and pressure headaches. After over four years of treatment virtually all of these symptoms have ceased. I am on 8 week injections and generally only have symptoms in the first week of the injection which, as yet, I do not fully understand why!

There are no quick fixes I am afraid.

[natcap1 in reply to Alfabeta]

Hi Alfabeta

Did these symptoms get worse before they improved along the way?

[Alfabeta in reply to natcap1]

They certainly did! fatigue, blurred vision cleared up very quickly, aphasia and memory are better but nowhere near perfect.. The sudden attack of semi consciousness during which tinnitus followed by auditory hallucinations got worse and became a signature symptom occurring as regular as clockwork about halfway between injections. The tinnitus stopped after about 18 months the hallucinations after about 30 months but the sudden semi consciousness was still occurring but went almost as soon as it occurred. The symptoms last about a week with up to 10 occurrences on the first day diminishing to one or two at the end.

Lately, during the last three injection stages - every 8 weeks - I’ve had symptoms only in the week after the injection. I had my latest injection on Friday and, so far, I’ve not had any symptoms.

I did acquire a new symptom towards the end of the fourth year which was small fibre neuropathy which was a minor irritation compared with all the rest.

I am hoping that my deficiency symptoms and the nerve damage is almost over but one can only live in hope.

[natcap1 in reply to Alfabeta]

Thanks Alfabeta. It is really a horrible journey isn't it, with some weird and not so wonderful symptoms. Some of mine are disappearing, after reappearing, some are more stubborn, but all in all I do think I am improving this last week. The only thing that gets me is I'll have a good week and then the next feels worse, so it is hard to know whether improvement continues, and mentally it is hard to put up with!

[pvanderaa in reply to Gunj_redjem]

Most neurological symptoms resolved quickly, within a year, but several have never fully improved. I’ve been on injections treatment for 11 years total. 8 of those on cyano.

[natcap1 in reply to pvanderaa]

Hi pvanderaa, when did you switch to cyano? I am having similar problems with hydroxo, definitely getting worse not better. Where do you source your cyano? Are you in uk?

Thanks

[pvanderaa in reply to natcap1]

Are you keeping a logbook of severity of your symptoms?

[natcap1 in reply to pvanderaa]

Hi yes Iam doing this. I started on weekly hydroxo (every other day makes me feel very ill) with tingling in arms, legs, mouth etc, some numbness overnight and some memory problems also losing energy slightly. Now I have all those but worse plus balance problems. Hydroxo seems to exaggerate this and a couple of weeks I have felt a small improvement by the end of the week, but not this week. I suppose I’m wondering whether this is just part of the healing process or it is getting worse. A small improvement would make me hope it’s going in the right direction. Thought I’d see if I get on better with cyano.

[buster_uk in reply to natcap1]

Cyno is available from the German pharmacies, Mycare.de. I ordered what I thought was 100 hydro when they came it was cyno.

I've used three ampoules as of now and they make me really tired for three days after (more so than the hydro)

Everyone is different.

They were cheaper than the hydro too.

[natcap1 in reply to buster_uk]

Thanks. Worth a try.