MRI show demyelination of frontal lobes

I had an MRI last week due to a poor score on a cognitive test after my complaints of brain fog. I got a CD copy of the MRI today and read that it showed bilateral frontal demyelination. I have read and been told by the neurologist that B12 is important for the formation of the nerve coating (myeline). I see a neurologist Friday this week. I am hoping that this is reversable. Hoping for a shot ever other day until neuropathy symptoms no longer improve. Praying that it is not to late. My internist refused more shots when I complained. I get one shot a week of (cyn...) and have been for 9 weeks. Prehaps I will be believed now. I have been wondering if I was just nuts! Any advice appreciated. The neurologist I am seeing Friday is actually one I first saw and liked. He moved to St. Louis and I made an appointment to see him after the cognitive impairment diagnoses. I am taking the CD with me. I will see the doc that order theMRI the following week. Getting my second opinion before my first!

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  • Hi xyz011. I just wanted to say I'm really sorry that you've discovered patches of demyelination on your MRI scan but please try not to panic yet. These scans are extremely sensitive and do pick up the smallest detail and I know, from experience, that it takes a neurologist to accurately asses the extent and impact of any potential damage shown.

    I recently has an MRI scan which did show some small white pinprick patches, which the neurologist was not concerned about - he referred to them as degenerative changes that would be expected for someone of my age.

    I know you have cognitave problems but these could possibly be due to B12 symptoms - lots of people suffer these when B12 deficient. So don't despair - all may yet be well.

    I note that you are having trouble getting B12 injections as often as you need, and that you're in the USA. ndodge, who also lives in the USA, goes to a Naturopath, who prescribes B12 for her (to take as often as she needs) - think she mentioned this to you in your first post some time ago? Perhaps this is a route you could try if all else fails with your medic's?

    I guess what I'm really trying to say is try to hang on in there until you've had discussions with your neurologist πŸ˜€.

    And I love the idea of getting a second opinion before you get the first - especially if it's from a neurologist you trust.

    The very best of luck and please let us know how you get on.

    Take care X

  • lovely post foggy. xx

  • Thanks Bluepettals2. I do so hate the way people are left to struggle alone.


  • Foggy does do amazing lovely posts! :-) We are so lucky to have her on this forum!

  • foggy for admin I think xxxx

  • Foggyme, thanks for the encouragement! I do appreciate your feedback. I never heard of a naturpath! I did get some B12 injections from Canada, but the injections are my emergency stash! I do find some humor with all my new found PA friends from abroad. No one in the US ever says to me "how you get on!" ;)

  • Hi xyz011. My pleasure. And oh how we all know about the emergency stash πŸ’‰πŸ’‰πŸ’‰πŸ‘.

    Really pleased you find and enjoy some humour here...words can be such tricky things. Or as Humpty Dumpty says 'words mean exactly what I want them to mean' πŸ˜±πŸ˜€.

    Not sure what 'how you get on' would translate to in American. Surely not 'have a good day' (only thing I can think of). If you let me know, I'll tuck the expression 'up my sleeve' and try it out on some of our American friends πŸ˜€.

    Good luck and take care x

  • this makes me so damn cross thru sheer arrogance many people suffer nerve problems /oh I get so angry , the consultant with a fat pay packet and health walks away, goes on holidays owns a fabulous house, is healthy and wealthy and the poor sod who is having nerve problems gets told to sod off.. you don't neeed b 12...I cant say anymore, I hate HATE HATE

    injustice,must get a cupof tea to calm down I hope you do recover and I wish you well my dear , I had to fight for one lousy injection every 3 months and my nervous sytem is shot to bits and NO ONE knows what is wrong. lack of b12 wasn't even considered. I did a gene tests and I

    don't absorb it at CELL level when I was told you have enough b12 in your blood stream, when are they going to realise the bloodstream is not THE FRIGGING CELLS! keep at it and we wish you well I love foggys reply.. all is not lost. xx

  • A gene test isn't going to show if you can absorb B12 at cell level. The test you refer to (MTHFR) gives you some indication as to how well your body can perform the conversion of methylenetetrahydrofolate to methyltetrahydrofolate (MTHF).

    The best tests to see if your B12 is actually getting into the cells are MMA (methylmalonic acid) and HCys (homocysteine). These two chemicals are used up in reactions mediated by B12 in the cells. If you have little B12 in your cells then the levels of these two chemicals in the blood will increase.

    There is a genetic polymorphism in the TCN2 gene that codes for transcobalamin (the protein that carries B12 into the cells). But the mutated version is more efficient at getting B12 into the cells, as determined by MMA (although HCys showed no difference).

  • I cant remember exactly unless I get my gene report out but I had the methyl problem where I didn't absorb 12. or vit d.

  • Sorry, but there really is no methyl problem that can stop you absorbing B12.

    I've looked deeply into the scientific literature regarding genes involved with B12, trying to find an explanation for my problems.

  • oh ok

  • . so this is wrong then ? a report from my genetics. quote..

    As both the MTHFR C6777T & MTHFR A1298C show that you have SNPs (i.e. genetic variations) that means that you do not process Vitamin B12 & Folic Acid & therefore the type of Vitamin B12 & Folic Acid that you will need is the pre methylated form, therefore I have included below some B vitamins minus the B12 & Folic Acid & a separate supplement containing the premethylated B12 & Folic Acid (as the separate supplement contains more B12 & Folic Acid that another supplement that contains all the B vitamins including premethylated B12 & Folic Acid).

  • Yes, that is wrong. Very wrong. It is typical nonsense from people trying to sell the expensive versions of loads of things.

    The 1298A>C mutation has not been shown to have any measurable effect. The 677C>T mutation affects the stability of the enzyme. It's irrelevant with one copy (heterozygous). Only if you're one of the 8% homozygous might you need methylfolate (not methylcobalamin).

    Here is a real scientist explaining all about MTHFR and the myth of methyl folate -

  • so do I need to look up my said ' genes and see if I am ++ or --

  • Please do not disregard what a genetic specialist stated in regard to MTHFR. Are you a licensed physician?

  • No, I am not a physician. Nor is the Genetic Specialist.

  • No, but he is a genetic specialist

  • No this is not wrong. Listen to what the genetic specialist said.

  • lorriestorrs which isn't wrong? the video or my report on my post?

  • If the report came from a genetic specialist it is correct. Genetic specialist are not making and selling supplements. There is definitely a correlation bw MTHFR and methylation.

  • lorrister that written report above is an explantion from my nutritionist with a lot of letters after her name who works in privat ehopsital healthcare who wasn't gaining money from me..

  • that was my point. The other person was telling you that it was wrong because they are just trying to sell you supplements. I do not feel he has the right to tell you that.

  • lorriester I know that was your point totally and agree he has no right to assume that-- and I trust my dedicated knowlegable nutritionist she is on seminars everyweekend. she is more than a nutritionist, but that is fbirder for you.

  • The point of being on a site like this is to share information and be a support to one another. There is no one right or wrong answer but an answer to what worked for each of us. I hope you find the answers to heal yourself.

  • I agree with you wholeheartedly Lorriestorrs about sharing information, with each of us have having very different problems and answers.

    Unfortunately FB continues to enjoy contradicting and arrogantly blinding with science, oblivious of the fact that there are many people on the site who find this upsetting and stressful.

  • science is not ALWAYS right.

  • The other person was telling you that it was wrong because they are just trying to sell you supplements.

    No, I was saying it's wrong because it's bad science. Now the nutritionist may have believed what she read on nonsense web sites, but it's still wrong.

    Oh, and I bet I have more letters after my name.

  • fbirder my nutritionist DOESNT read nonsense websites ,ithink that is a bit derogatiive .

  • letters after your name? I could think of a few.

  • No facts to back up your argument, so you resort to personal insults.

    Welcome to my 'ignore' list.

  • you have a list , heck-- a lot of people then ? the letters I could think of ESI. expert science information. how is that insulting- I think it is praising.

  • don't get sad fbirder, I wouldn't deliberately upset anyone, we all have different opiniions and we are here to discuss them without assuming that qualified people read junk. i.e my well read nutritionist.

  • Hey. Pay over the top for pointless pills and jabs. All I can do is point out the science.

  • Hi BluePetals

    Here is a research paper taken from Tracey WItty's B12def, site that might throw light on this complicated issue πŸ™‚


  • polaris that is over the top for my brain but the substance p report on th eright of that page, I had here already and I wondered if that wa s the caus eof

    this painfulhead pressure as it started when I know damn well I had an Addison crisis in 2010 2011 2012

    I was so ill I don t know how I didn't die and no F..... er wanted to listen, just made out I was imaging it and I was 'depressed.' depressed with haywire symptoms in my body!!!! as if!

    but I found out from Byron Richards in the usa he answered me on a podcast and I looked up his substance p page- it fitted and its caused also by low

    cortisol and I had low cortisol 217 nmol and the arrogant little shite head endo, who I saw said to my gp-- no treatment for her until she sees a psychiatrist, icould have died I was sooooooooooooo ill. anyway I survived. but it ha s taken its toll. and NO diagnosis to prove it either

  • It's too much for most of our brains BPetals, including mine, especially at this time of night.😴 In short, I agree with Lorriestors.

    You've been through such a terrible time and have done very well to come through it and not let it get you down. Keep on fighting and searching and get as much B12 in the form of injections plus whatever oral supplements you find suit your body. xx

  • well you have had a rough time my darling. xx

  • Me too, high MMA

  • Thanks bluepettals2, I was a very angry woman yesterday. In order to stay in compliance wit the rules the site, I wont tell you what a 58 year old american woman would say! ;)

  • Just to add a further thought. Cholesterol is also required for the formation of myelin - in fact about 25% of all the cholesterol in the body is in the brain so statins wouldn't help if you are on them.

  • Actually, the body can make its own cholesterol if it needs it. People can eat a 100% cholesterol-free diet (vegans) and still have all they need (or even too much). So taking statins isn't going to reduce it to harmful levels.

    I got quite cynical when working on cholesterol-lowering drugs back in the 1980s. I thought that this was a pharmaceutical company's wet dream - a 'disease' that is suffered by more than half of the population (most of whom have nothing actually wrong with them) and that can only be treated by getting these people to take your drug for the rest of their lives.

    My doctors get quite upset when they tell me my cholesterol is 'high'. When they tell me the number I reply - 'Oh, you mean it's normal'.

  • Yes, I am aware that the body can makes its own cholesterol. What I was trying to say regarding the post was that if you know you have demyelination and myelin is largely made from cholesterol, it just might be a signal that you are short of cholesterol and at least should avoid statins.

    The body regulates cholesterol, if there is none in the diet the liver makes more, and if there is a lot in the diet the liver decreases or stops production. That's always assuming you have a fully functioning liver and the raw materials to keep on making it ad infinitum if there is none is in the diet.

    I am personally not a fan of statins and I was reading some time back (long forgotten where) that there is correlation between the use of statin drugs and the rise in alzheimers.

  • Yup, my wrong. You are correct. It appears that statins can interfere with myelination -

  • Interesting connection between statins and myelination. Howver in case I have no need to take statins. My husband however takes them, good to know,

  • I managed to get my diabetic nurse happy by losing some weight, which got my cholesterol down to something even she was happy with.

    However, I expect that to be a temporary thing.

  • I lost weight with the help of a health coach and she was amazing. I went to high school with her and did a 12 week session on the phone and on line since we live several states appart. She really helped me to reframe and retrain my brain in reguards to food. I probably would never had used a coach if I had not know her from long ago. I have managed to keep over half off after a year, the anemia and wonders of the womans "change" finally kicking me in is responsible for not keeping ot all off! Start everyday with a green smothie and it sets me off to a good start!

  • and if you are hyperactive thyroid I thinkyou have low cortisol

  • bluepettals2 , fbirder , Lorriestorrs

    There are apparently 34 variations of the MTHFR gene - and only 2 have been really investigated at this point.

    As fbirder says it affects the processing of folate - it makes it less efficient it doesn't prevent it entirely.

    The combination that bluepettals mentions means that the efficiency has been reduced by 50%.

    There is at least one other gene that I am aware of that seems to have an interaction with methylation - COMT which relates to neuro-transmitters - and if you are homozygous then methylated forms of B12 and B9 can knock the processes that recycle neurotransmitters - particularly the processes in the brain - and can cause some problems.

    Basically my take would be that the genetics are extremely complex and far from fully understood at this point.

    Reality check is that people on this forum report a very mixed response to different forms of cobalamin and the state of the art probably is that the only way to find out what works for you is to try and see.

    I haven't had genes profiled but I can say that I actually use 3 forms of B12 - because I find different forms useful for different sets of symptoms.

    you can also look at the COMT genes on here but I found I needed to go elsewhere to figure out what is going on in the processes under discussion.

    although this is a commercial site it is honest about being so and very careful about not pushing methylated forms.

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