demyelation of white matter in brain update

[xyz011]

I am seeing two neurogist who have different opinions.... One suspects B12 deficiency caused demyelination problem shown in MRI another wants to rule out MS. I was given cognitive examines by my the neurologist who thinks it most likely is B12 and he determined I am NOT cognitive impaired! I was having brain fog when tested the first time SO another MRI with contrast and a spinal tab is being scheduled to figure out the problem. In the mean time I am getting weekly shots and my B12 is rocket high nearly 4000 and MMA in normal range. I am wondering if B12 could of done the demylination of white matter so quickly????? .... First symthoms of deficiency were pricks 14 months ago... Injections in started in late January 2016... Stopped until symthoms came back lates summer. I have had 13 weeks of injections.... Had 11 weeks when I had MRI.

[Foggyme Administrator]

Hi Xyz011. Oh dear, I'm so sorry that you're having such problems.

In response to your question 'if B12 [deficiency] could have done the demyelination of white matter so quickly', the honest answer is, I don't know.

4000 is high for serum B12 but it's only to be expected when B12 is being injected frequently. We have seen higher (5999) and that should not be a reason to stop your B12 injections. When you say you've had thirteen weeks of injections, do you mean one every other day until no further improvement - this is what it should be for neurological involvement, which you most certainly have.

It seems odd that your injections were then stopped 'until symptoms came back'. You should have received injections every eight weeks, as per treatment protocols for the neuro regime.

If one neurologist thinks that B12 deficiency has caused the dymelination, then you most certainly should be on the neurological regime (B12 injection every other day), especially as you still have symptoms. You should stay on that until there is no further improvement, then revert to eight weekly injections (though this is not enough fro some people - but that's perhaps for another time).

If this is not the treatment you're getting, then it would be a good idea to see your GP with a view to commencing (or re-commencing) the neurological engine. If your GP is reluctant to prescribe this, perhaps the neurologist could intervene on your behalf. Or if you want directions to specific guidelines, these are contained in the PAS pinned posts (or put up another post for help, if needed).

Again, a serum B12 level of 4000 should not stop you having this treatment since testing is not recommended once treatment has commenced, unless they are looking for low levels. It is high simply because you have been having injections - many GP's (and consultants) do not know this.

If the second neurologist wants to rule out MS by doing another MRI with contrast (will show more detail) and a spinal tap, then that can only be a good thing, as you need to be sure that nothing else is going on.

Really sorry I could'nt answer your question about the demyelination. Perhaps someone else can give you advice on that.

I know it's really difficult, but keep battling on and please post again if you need more help.

Take care x

[xyz011 in reply to Foggyme]

Thanks, My shots stopped after January until pricks returned because the neurology was changing practice to St Louis so he had said to teturn to family physican if pricks returned. My family Dr. Then gave me One injection and then sent me back to theneurologist who I saw 3 days before his last stay! Two neurolgists and my internist seem cluess about every other day. After last b12 and MMA the neurologist who thinks b12 dudnot increase the injections set by my imternist. $@),3($4&

€#~>> swear words in appropriate form!

[xyz011 in reply to Foggyme]

Injections ... One a week of the cym one

[fbirder]

If you're a member of the PAS then you can access a document that describes Sub-Acute Combined Degeneration of the Cord SACDC - pernicious-anaemia-society....

It explains the symptoms and how they can be similar to those of MS.

[xyz011 in reply to fbirder]

I am a member, will access! Thank uou!

[xyz011 in reply to fbirder]

I just read document. I was given all those tests with pins and tuning forks.... My walk is good. When my b12 was first tested in Jan. it was 214 and my MMA was in the 800s. I take the cy. Injections. (Not sure how to spell off hand). These are the injection types given in US. I see my internist on NOV. 10.

[Foggyme Administrator in reply to xyz011]

Just a thought...have you read 'Could It Be B12 An Epidemic of Misdiagnoses, by Sally M Pacholok and Jeffrey J Stewart? Or 'What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency' by Martyn Hooper?

Would give you lots of very good information so that you can deal with your medic's from an informed position.

You could also use the Pacholok book to show them dosing information for the neurological regime (book based on UAS research). This information is also contained in the PAS pinned posts but they may not accept that as its in accordance with UK guidelines. If,you look on the Internet, you may be able to track down specific USA guidelines that you could present to your medic's.

Good luck x

[xyz011 in reply to Foggyme]

I have Hooper's book and I have read several chapters (out of order). I am held up in my daughter's Chicago's apprtment assiting while she recovers from tonsil removal. This would be a good time to watch the movie about Sally. My daughter has nexflix!

[xyz011 in reply to Foggyme]

FYI- I have been told by one neurologist and my internist to STOP reading info on the internet!

I think they like uninformed patients! <€*^£>{!€|]#%.

[Foggyme Administrator in reply to xyz011]

Oh yes, uninformed patients are the best 😖.

But yes, there is some pretty odd stuff on the Internet.

However, NHS choices directs patients to Health Unlocked for further support 😀😀👍.

Hurrah 😀

[xyz011 in reply to Foggyme]

For sure!