Just caught the end of 'Meet the Author', Suzanne O' Sullivan, neurologist and author of ' Brain Storm - Detective Stories from the World of Neurology'. Looks an interesting book:
bbc.co.uk/iplayer/episode/b...
It struck me that, when speaking of people's experiences with unusual symptoms - hallucinations, etc. - some of what was described could have been B12 symptoms, yet it's so frustrating that it's almost never recognised or mentioned by medics.......
It reminds me of a friends relative who had epilepsy. Having met this person I was trying to illustrate the bigger picture. Typing epilepsy and B12 into PubMed revealed quite a bit - as did thyroid. I don't think either were checked ....
Hi Marz. Yes, the list goes on (MS, ME, Parkinson's) of what you wonder could be improved before resorting to drugs (that in the most part I found only made things worse and caused other problems).
I find I'm having to 🤐 more and more. Someone I knew had extremely low B12 and high MMA but went to three specialists before eventually being diagnosed with MND - sorry, I know neurologists are the experts but I'll still always wonder........
In the US, MND (ALS) is treated with high dose Methylcobalamin B12 injections and is extending lives. Interesting that MND is named after Lou Gehrig, a famous athlete who had it, as many people with ME, B12def. find their symptoms return after overdoing exercise
It is quite likely that many of us choose not to mention hallucinations etc. to GPs or consultants, since they often struggle to link even the most visibly obvious malnutrition symptoms to B12 deficiency. Also for those being offered anti-depressants or psychiatrists, it may not prove to be a wise move.
I have never had visual hallucinations, but fairly often smell aromas which brain seems to have interpreted wrongly. Now that I am aware that this can happen, it no longer worries me. Supermarkets are far more likely to smell of baking bread than raw sewage, although at the time, it seemed convincing enough!
I agree absolutely Cherylclaire about not mentioning hallucinations!
Would definitely advise not to after our relative went through the terrible experience of being unable to get out of bed one morning just before her B12 injection was due. She'd been misdiagnosed with ME for years, with one of the earliest symptoms being loss of smell.
As soon as hallucinations were mentioned, GP pounced on this symptom only and prescribed antipsychotics, ignoring the fact that these had already made things worse, causing dizziness and falls. Our pleas to bring forward B12 injection were ignored and then withdrawn altogether.
I suppose I shouldn't be surprised seeing that the system ensures surgery generates most income from mental health diagnosis, whilst thyroid disease generates very little and B12 def. probably none !
The Heaith Secretary's latest failure to declare his financial interests shows where all priorities are 😬
That's another appalling case! So sorry.
Autism spectrum problems have also been linked to B12d and though normally gregarious and laid back, if I get problems with my B12 I find coping with external issues really difficult.
Glad it's not just me Denise - my family commented that I get stressed very easily these days, especially about practical problems, and I notice tingling and numbness comes back with a vengeance. I took note of one of your replies and have switched to daily injections when this happens -it seems to help a lot so thank you 🤗
I really don't how others here manage with only one Injection every few weeks or three months......
I also seem to have problems that really aren't that difficult to solve- like working out how to take medication most effectively: timetabling, remembering, precautions re. diet etc. and storage conditions. Confuses me easily. Everything also seems to take so long to complete.
Any paperwork particularly problematic- especially if it is official, but cannot read a book any more, because it is a chore trying to remember characters, plot etc. Just free papers on the tube, graphic novels (yes, okay, comics) and research papers- as long as it's quiet and I've got a highlighter handy because I won't remember anything useful. I can't sort out much of anything beyond a simple appointment on the phone either.
I'm with you, Polaris- this is me on one injection every other day. On one every 3 months, I was probably certifiable ! If GP had told me at that point that I had a mixture of early-onset Alzheimer's, autism and bipolarity, it would not have surprised me greatly.
....Any of this strangely comforting ?
Very comforting and timely, Cherylclaire! I'd been feeling normal the last two weeks on extra injections 🤗 and felt I could at last tackle paperwork I'd been putting off. A really bad idea - couldn't believe how stressed I became.
I can't help feeling that many well people are made sick by the amount of beaurocracy and proof of existence involved in everything nowadays though!
Causes of B12 def/anemia
Weakness in legs due to B12 def?
Is Tinnitus related to B12 def?
Finally a diagnosis not B12 def
Root cause of autoimmune B12 def
