MRI show demyelination of frontal lobes

[xyz011]

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!

[Foggyme Administrator]

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 😀.

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

[xyz011 in reply to Foggyme]

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!"

[Foggyme Administrator in reply to xyz011]

Hi xyz011. My pleasure. And oh how we all know about the emergency stash 💉💉💉👍.

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' 😱😀.

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 😀.

Good luck and take care x

[Foggyme Administrator]

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

👍

[Hidden]

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.

[Hidden]

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.

[xyz011]

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!

[xyz011]

Me too, high MMA

[xyz011]

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

[xyz011]

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!

[Lorstor]

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

[Lorstor]

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

[Lorstor]

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.

[Polaris]

Hi BluePetals

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

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

x

[Lorstor]

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.

[Lorstor]

No, but he is a genetic specialist

[Gambit62 Administrator]

Hidden , fbirder , Lorstor

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.

ghr.nlm.nih.gov/gene/MTHFR

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.

mthfrsupport.com.au/what-is...

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

[Polaris]

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

[Lorstor]

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.

[Polaris in reply to Lorstor]

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.

[ndodge]

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