I have Sub-Acute Combined Degeneration of the spine due to pernicious anemia. How long does it take for methylcobalamin to work

[montague53]

Hi everyone, I'm new to this site and would love some advice. I have Sub-Acute Degeneration of the spine. I am now taking injections of Methylcobalamin and Hydrocobalamin every other day. How long will it take till I see a difference, that's hoping its not too late. would be grateful for others experiences and what I should do. I inject myself as I am a nurse. I have degeneration of the myelin sheath and spinal cord degeneration, brain lesions and white matter on MRI. I have bulging disc's and walking problems with abnormal babinski and romberg neurological tests.

[deniseinmilden]

Oh dear, poor you!

As everyone is different it is impossible to say what improvements you will get and how long it will take - the only guarantee is that, with enough B12 and supporting supplements, you will improve.

I had lots of bad neurological symptoms but was too bad to articulate my issues to get a referral and wasn't scanned. By the time I was well enough to get to see a neurologist I had been doing daily jabs for several months and it was obvious that was the right course of action so he advised I carried on.

I belong to a Facebook PA/B12 Deficiency Support Group and several others were dx around the same time as me with similar problems to yours.

This was just over 4 years ago and we have all had significant improvements.

I think those of us who had chronic deficiencies with damage caused by decades of untreated symptoms have probably have seen more, gradual, improvement than those who were much more acutely affected.

In all cases the critical factor has been to get enough B12 and supporting supplements.

As far as I know I think we all use hydroxocobalamin and most of us inject at least daily.

I found Pascoe do 1.5mg in 1ml ampoules and I use those daily. There are a few who do 2 injections a day using either the standard 1mg in 1ml or the Pascoe higher strength ones.

We all need extra folate, potassium, and magnesium and many of us take a broad spectrum multivitamin and mineral supplement and need extra iron and vitamin D to keep the B12 working.

I have gone from "can't walk, can't talk, can't remember anything, couldn't recognise anyone, couldn't stay awake for more than 2 hours at most" to pretty normal functioning. I still have some difficulties but I think they are more due to autoimmune problems, digestive tract problems and malabsorption than the B12 deficiency specifically.

[montague53 in reply to deniseinmilden]

Hi Deniseinmilden and teebeevee for replying to my post. I really appreciate the amazing information yous have both given me. That gives me hope, that maybe in time I may be able to recover some of my neurological symptoms. Its just so scary being in this situation and not knowing what the future holds for me. I have just recently increase my B12 injections to 2 to 3 per week and am definitely starting to see some good improvements. I was at Neurology today for the first time and the Dr wants to test me for Myasthenia gravis! I really hope I don't have this as well. Is it common to be misdiagnosed with Myasthenia Gravis instead of B12.

[teebeevee]

Oh I feel for you, and how maddening it took so long to get a diagnosis for the cause of your problems. It stuns and infuriates me how a simple blood test is so often overlooked and people suffer and probably sustain some level of permanent damage.

I was pretty severely hit by neurological symptoms, the whole difficulty walking thing, the numbness and tingling and crazy electric sensations, an "inner trembling," heart palpitations, double vision, but was most severely impacted in my brain and how I perceived reality. I felt like I was on a permanent hallucinogenic drug trip. It took a few weeks for me to be able to walk straight again or stand in the shower without clinging to walls. Then about four to five months of frequent injections (2-3 x a week) before I really felt a dramatic enough difference, the ending of the electric feeling and the cessation of the heart palpitations, that I feel I might actually improve. Still I plateaued for a long while, and my MMA remained relatively high. But now I am at about 10 months since my first injection, and have improved quite a bit this past month in particular through adding other B vitamins in doses larger than the B-complex I was taking intermittently all along, particularly B2. Now my MMA is lower, my brain symptoms are improving much more quickly, I feel more like my old self for hours at a time now ha. And I don't do B12 injections so often anymore, down to about twice a month. So there is hope, but it takes so much longer to heal neuro damage than I would have expected. I wish you luck -- and you have my greatest sympathy!

[montague53 in reply to teebeevee]

Hi Deniseinmilden and teebeevee for replying to my post. I really appreciate the amazing information yous have both given me. That gives me hope, that maybe in time I may be able to recover some of my neurological symptoms. Its just so scary being in this situation and not knowing what the future holds for me. I have just recently increase my B12 injections to 2 to 3 per week and am definitely starting to see some good improvements. I was at Neurology today for the first time and the Dr wants to test me for Myasthenia gravis! I really hope I don't have this as well. Is it common to be misdiagnosed with Myasthenia Gravis instead of B12. Thank you