Just got diagnosed with severe nerve damage from b12 d. Possible spinal damage.
I never had mobility issues, but struggled with mostly autonomic system damage and sensory damage, like tingling and burning all over my torso and arms and legs.
I've been injecting for six months now and have had a lot of recovery. I just am writing to ask if there is any possibility of recovering more from nerve damage after six months.
My memory is still not back to it's old self, I have heart rate that's sometimes very high and sometimes doesn't regulate itself upon standing, I have random flares of nueropathy now isolated to arms/hands/legs/feet rather than full body, my mood is still down and I have gut issues that require me to take enzymes to not have acid reflux.
Can healing take years?
What are the odds of making a full recovery?
Written by
SickNessa
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Yes kero going with b12.I was very disillusioned by a neurologist saying the window was 6 months for healing.
It is slow but i believe improvements carry on.
Make sure yiu vitamin D ,folate , iron/ ferritin and anything ejses your doctor willing to check is done 3-6 monthly until yih find a naintenenxe dose.
It's relatively early days I
woukd say.
Are you injecting every other day?
Hope improvements happen soon.
Keep a log.
My daughter has POTS fro. Undiagnosed b12 def/PA. Hope it temporsry for you.
She has a drug called midodrine .
Pots U.k a good source of info.
On autonomic problems. Hindts like drinking loads of water before standing. High salt foods something to look into.
She tried diets abd compression tight and the right exercises before going on a drug. Good if you get info on that . Some avoid drugs or its a stepping stone. It affects her digestion greatly.
Hi Nackapan, I am interested in the idea that undiagnosed B12 def can lead to POTS as I have this in my family. Can you say some more about why that happens please?
Hi, sorry but have no answers for your problems but was just wondering which enzymes you take to help with reflux problems as I am also having problems with this.I’m sure someone on this wonderful forum will be able to help with your back issues.
I was still improving 1 year after starting injections.
Also still tweaking diet. Wahls Protocol is good for nerve repair.
After 18 months I still have a bit of left foot drop but I have noticed other people my age have the same (mid 40s) and I am trying to relax about it. The stress and worry about 'permanent damage' can be very unhelpful.
I was where you are. I was diagnosed in 2008, and was wheelchair dependent then, as I couldn’t even sit unassisted. I have the subacute combined degeneration due to lack of b12. I’ve regained my mobility, but my improvements plateaued after 3 years. I still have issues with autonomic nervous system issues, often fall because of gait issues, and my short term memory has been damaged. I was told back then, at my worst, that I only needed one shot per week for two weeks, then once a month for life, but was struggling to get by. I found the PAS fb group several years ago, and began self injecting. One of my 3 kids was just diagnosed, and thank goodness she isn’t symptomatic. Keep at it, keep a log of symptoms (even if they don’t seem related at the time) and don’t forget we are here for you!!
I’m sorry, I’m just now seeing this. I deal with POTs like symptoms, also difficulty regulating temperature, and sometimes spontaneously get goosebumps or flushing out of the blue.
I am sorry to read you have SACDC i think I have the same but no one in the med prof seems to want to get this checked or confirm it, and I am unsure as to who I should go to for advise on this, for example will an MRI show the degeneration. I had an MRI some years ago which showed degeneration but no one said it was because of B12. I have been self injecting since 2018, prior to that, since late 2014/5 I spent most of my time on the bed, I can now stand for short periods and use furniture for support instead of crutches which have caused damage to my right hand, but if I attend a GP appointment ( Itry not to go now) I have to inject the day before and wondered if you experienced anything similar to this. I am always weakend by my attempts to walk and I still fall when the tiredness sets in like when I attempt to garden. I rarely leave the house because I know I will fall but Ive got use to it now, and seem to know how long I have before I will fall, I also have foot drop in my right leg. so I have to be careful not to trip. Having read how often many of you are are taking their B12 I think I am going to try twice a week instead of once, and maybe i will be brave enough to try 3x
Mine was diagnosed through both mri and physical exam. I do find I forget words or trip and fall when it’s been 4-5 days since last injection. Definitely try to work yourself up to at least 3 times a week, seeing it you show improvement.
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