B12 recovery ?

[Oundle]

Has anyone recovered mobility from bed/wheelchair 24/7 with B12 alternate day injections ?

[Sleepybunny]

Hi,

I think there might be a relevant story in following film.

b12deficiency.info/films/

There are various case histories in following books.

Some of the stories have details that may be upsetting.

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF (British National Formulary) treatment info in book is out of date.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Case Report about patient with SACD (sub acute combined degeneration of the spinal cord ) due to B12 deficiency

ncbi.nlm.nih.gov/pmc/articl...

I am not medically trained.

[Oundle in reply to Sleepybunny]

Thank you for the comprehensive reply. I have at least two of the books you recommend, and found Sally Pacholok ‘s very helpful.

[Nackapan]

I was bedbound initially after a collapse that I couldnt gst up from. I thought a stroke. I then had virtigo and very bad balance issues. I started every other day in Nov. 18 then an uneanted break for 5 weeks on every b12 tablet/sublo guak then every other day b12 injections back. I started to get to walk in January and progressed to a few hours a day out of bed. Symptoms got alot worse before improvements with daily migraine/ tension headaches/pain ect.

My daughter was bedbound and was passing out with fit like episodes . She uses a wheelchair now to go out . She eventually was diagnosed with a severe b12 deficiency megobalastic anemia and Pots and Ehlos Danlos hpermobility.

I think the POTs was caused by undiagnosed b12 deficiency for too many years. Shed een labelled with fibromyalgia .

I hope the b12 injections improve/help your condition.

[Oundle in reply to Nackapan]

Thanks for sharing your experiences. Clearly, a very difficult time for you. I can only hope that B12 injections help me.

[Jengastar]

Yes! I went from fit ultrarunner to being bed bound for weeks at a time, felt like I was pinned to my bed and really couldn’t move even to get a drink or anything. On the days I could get out I was very fatigued, in pain, like a hangover too and struggled to get about. 3 days of injections was enough for me to feel like a new person. I would say I am about 80% recovered after 4 months of daily injections, I still get a little tired, and have pins and needles, and can only run a little and slowly, but still just a massive shift from where I was at spring. Good luck with your recovery.

[Oundle in reply to Jengastar]

Thanks. That sounds like amazing recovery. At the moment I can only dream of such an improvement in myself. Early symptoms in the late 1970‘s led to a diagnosis of MS in the early 1980s, when there were no local MRIs. My first MRI was in 2009, and my consultant said that it was not MS, But that he did not know what it was. Since then I have gradually declined to the point where I have two carers four times a day, and I am in bed/Wheelchair 24/.7.

With research I have discovered that I am B12 deficient, but my GP and two consultants have all refused alternate day treatment with B12 injections. So I am being forced to go it alone. I too was a fit young person, which included cycling from London to Dover, then across Belgium, Germany and the Black Forest to Switzerland, and back via France to the UK.

My main aim now is to try to recover some better health.

[Jengastar in reply to Oundle]

I was ill for about 6 years, although bed bound for the odd week or two in that time, it was really just for a year from April 2019 that my serious neurological symptoms affected me. I too am going it alone, without any support from my drs, but this forum has been very supportive. I really hope that you see improvements and get your quality of life back! Good luck and keep us updated with your journey.

[Oundle in reply to Jengastar]

Thanks Jengastar for your interest and concern. I am now 78 and feel I have lost half my life. Now, the only way is up! If I get improvements I will post them here to encourage others, as my situation has been, and still is, one that I would not wish on anyone else!

[Oundle]

In general, what level is the cut-off point of a B12 deficiency?

[Narwhal10]

Hi Oundle,

Sorry to hear of your ill health. Fingers crossed that you find a regime that works. I am pretty new but I understand that the cut off point for B12 deficiency varies from depends on different NHS Trusts. You are in the UK ?

[Oundle in reply to Narwhal10]

Thanks for your answer. Yes I am in the UK, but my GP, and neurologist won’t prescribe B12 more than one every three months. I may have to self medicate.

[Narwhal10 in reply to Oundle]

My pleasure Oundle,

I hope you understood what I meant to type - it varies from Trust to Trust. (Vertigo and brain fog). Sorry to hear that your clinicians are not forthcoming with your treatment especially given your history and current health.

You have to decide what is best for you. I prepared for the worst (bought from Germany) and hoped for the best - I did have 4 weeks of loading doses.

Best wishes

[Oundle in reply to Narwhal10]

Thanks for your concern.

All the best.