Im sorry if this has been mentioned before, but im fairly new to this site and all things neurological and ive noticed on the past 4 thread ive read, that B12 has been mentioned.
can someone please explain (in really simple terms) what the link is. Ive just had a quick google, but im not sure i understand if B12 deficiency can cause MS symptoms or whether MS sufferers or more likely to have B12 defiency or vice versa. Ive been on b12 injections for almost 12 years now. i went to my GP at the start of this year with pins and needles, balance problems, headaches, extreme tiredness, shooting pains in my wrist and painful knees. My GP referred me but clearly stated that all these things could be ailments in their own right or could also be linked to something else. No mention of MS was made at all, but ive been recently wondering if this is what he was getting at. Just wondering what the B12 has to do with any of it. i have my first neuro appt this friday.
I’m probably the one that’s guilty of mentioning it so I can only tell you what I know.
B12 deficiency can mimic MS symptoms, so doctors often check this vitamin level. In particular, with vegetarians (as I am) it’s often looked at first, because it’s a vitamin that can only be found in animal products.
On the other hand, I have heard on this site that those with MS can often have low levels of B12. I’m probably completely wrong on this next bit but as I understand it, B12 is used in the body to repair damaged myelin (which is what MS destroys).
In any case its good to keep a check on B12 levels, as far as I understand.
If I got anything wrong here, hopefully someone else will correct me.
Hi, I have been looking into this big time. I have had neuro symtpoms since 1991 and many MRI scans during that time. A lesion finally showed up in 2011 after clear scan in 1991, 2000, 2005 and 2008! I have been diagnosed with many things, such as virus, stress, ME, plantar facciitus, delayed radiation myelopathy (from treatment in 1990), possible MS, CIS and myelitis. My most recent is sub acute combined degeneration of the spinal cord secondary to pernicious anemia (ie B12 defiency). This latest dx would make sence as for years I have had chronic B12 deficiency which has been missed for so long it has eventually led to damage of the spinal cord.
Anyway I have just recently started B12 injections - 3 x per week for 2 weeks, then once a week for 6 weeks then on to fortnightly. I have joined the pernicious anemia society and discovered that methycobablin is better for people who have had nervous system damage. It is the hydocobablin I have been having. On Monday of this week I travelled to Wales and saw a doctor who gave m e an infusion of the methycobablin B12 and he also gave me the vial for me to self inject myself at home.
From what I know B12 deficencly does not cause MS. It only causes lesions and symptoms similar to MS. That is the only link. I have been told by neuro that the % of people with MS and low B12 is the same as for the standard population. some neuros give people with MS B12 in order to help rebuild myelin after a relapse.
On the PA site many people feel that they are not getting enough b12 from their doctors. It is widely recognised that the standard 3 monthly injections are just not enough.
I would suggest getting more B12 and put MS out of your head… Easier said than done… I still look at this site every since a neuro put MS into my head… I cant get it out!
I’m keeping a careful eye on the Vit B12 possibility. I’ll probably take a look at the PA forum. I’m at least lucky that where I live, I can buy B12 over the counter. At the moment I’m taking a capsule of 4ml/1000microg every ten days. Whether I’m absorbing it or not is another question.
Sorry to hear you’ve had so many misdiagnoses over such a long period, and glad you finally got the treatment you needed. The only reason I have MS or B12 deficiency in my head is really down to the heat intolerance I have. From what I’ve read, these are the two possible diseases that both have this.
The B12 option does seem possible, but I noticed that the mcv (blood cell size) on my first blood tests three years ago looked fine, even though I was already having symptoms. My extremely logical brain is having trouble figuring that one out.
And isn’t this forum a good one? I’ve learnt far more here than anywhere else.
Anyway, I now have an appointment with a second neuro in May. From what I understand he’s going to do a second nerve conduction test for starters.
Do you think its likely that my neurologist will dismiss me once he/she sees i have pernicious anaemia?
My appointment is this Friday (4th April). It seems wasteful to me that my GP didnt inform me of the fact that the symptoms i presented him with were similar to pernicious anaemia in the first place rather than send me to a neurologist.
Im really anxious about my appointment as ive worked myself up about it so much and im convinced im just going to be ignored, without further investigations. Ive been questionning my GP for years that i didnt believe my b12 injections were making a difference and asked if they could be increased. I was continuously told that my levels were prefectly adequate so increasing the frequency was unnecessary.
From what I have read and what the doctor in Wales said is that too much attention is made on the levels in the blood and NOT what the patient is feeling. You cant overdose on B12 and it is also cheap so why not give patient extra and let patient work out what is best for them. I have bought Martyn Hooper’s books on pernicious anemia and there are loads of stories of people improving when they got more B12. Please reassure yourself that it is B12 and not something else.
I used to take B12 pills originally for a mild allergy to misquitos, as odd as that might sound. It cut down on the itchy effect and even the swelling of the bite. Then, because of Raynauds, it became a regular routine. I’ve been lax lately in taking it, but I’ve never noticed a difference when it comes to the nerve twitches, however, I noticed it cut down a little on my vasospastic attacks caused by my Raynauds.
I have MS and was told had low B12 so am now on 12 weekly injections for it. No idea if its cause of the MS or the reason why, would be interested to know for sure.
The only way to be sure is to have regular injections of B12 - once every 3 months is useless. Did you have a lumbar puncture ? If it was positive then you probably have MS - if it was negative then I would push for more injections especially as they can do no harm. When I started the B12 numbness and pins and needles vanished within 3 weeks (after suffering for 6 years) spasticity still present but that is CNS damage and harder to recover from.