B-12

[Andipw3]

My husband wants to get me a B12 patch? I guess it's more readily delivered into the body. supposed to really help with symptoms. Has anyone heard of this? I guess its not easy to deliver into our bodies with vitamins.

[Andipw3]

That's interesting. Did you ever get your levels checked? Are you taking a particular ms med with it?

[J33168]

I was on B12 shots in the beginning.  I had to go once a week for 4 weeks.  After that my neurologist had me get a shot once a month for 3 months.    the whole time I was getting the shots he had me taking one 1000mg tablet once a day.   After the 3 months he had me continue taking the tablets.   when he had me start the B12 tablets he also had me take Folic Acid.  I was hoping that I could quit taking the folic acid when I quit the shots but he said no.  I have to continue to take the folic acid with the B12 tablets because they work together.    My energy level has gotten so much better since doing the shots and continuing the tablets.

[Artanis12]

There are defined criteria for autoimmunity, and MS is pretty dicey on most of them. As with all things MS, the relationship of the disease with our immune system is (wait for it) complex. I think they tell us it's autoimmune primarily because immune mediated is not an easily explained, clear-cut concept, takes too long to explain, and calling it autoimmune is something we all understand in the basics and is close enough for all but the geekiest patients.  

Bottom line, they just aren't sure how, exactly, the immune system is tied in to the process(s) in MS, but it IS heavily involved.

[Andipw3]

Hi,, ok so I read MS is now being refered as " imune -mediated" rather than auto imune. ?? I'm not sure if this is changing the philosophy of how to treat ? But it seems there are different ideas brewing. The b-12 I believe is to help with symptoms. As far as the estridol.. I believe that is being looked at in a more practical matter to treat the disease itself.. But in the testing phase it is being used with copaxone. And copaxone is not an immune suppressor.. Which then leads me to wonder if suppressing the imune system is an accurate choice. Tying into my question above.. Imune mediated or auto(self) imune. ?  I'm just throwing ideas around based on literature I read. I for sure go on rep websites... UCLA/ nmss/ ect. Anyway.. I believe with the b-12 patch.. It is slowly released. The sublingual b12 is more than the daily allowance. Most take that. Who knows. I'll ask my doc for the fun of it. About it all. I'll let you know.. He loves to discuss., he's an authorative And lectures.

[immisceo]

MS IS still considered to be auto-immune.  You CAN overdose of any vitamin (or any substance for that matter. "It's the dose that makes the poison"). Be careful what you're reading. They may not be reliable, evidence-based sources. And don't forget, big supplement is a multi-billion dollar annual business too, only it's complete cowboy country. Thanks to the Dietary Supplement Health and Education Act of 1994, in the US there's essentially zero oversight, zero regulation. Any claims can be made. Any amount of ingredient can be used, with no need to prove safety levels and no legal repercussions. Tread with caution.

It is easy to grasp on to anything and everything that offers hope or a fix, especially at the beginning. But there are thousands of people working day and night to eradicate this disease. It's just simply not a fast or straight forward process. And that's frustrating, and that stinks, but we're still a LOT better off than people 20+ years ago precisely because of this research which is predicated on the auto-immune hypothesis.

Yes, there are a lot of blank spaces left in the conundrum that is MS and MS research. Vitamin D is being investigated because of the global incidence and prevalence of MS cases. It appears to be significantly skewed to populations living the furthest distances from the equator. There are many theories as to why this might be, but looking at Vitamin D is an obvious avenue of inquiry.

And that's science. Make an observation, posit a reason for that observation, conduct experiments, form a theory that explains the results, and see if you can replicate it. That's were things are with Vitamin D. The jury's still out. Perhaps there are studies using b-12 and nicotine and estriol and countless others, I'm sure. There likely are interesting things on the horizon, but for now I stick with things I can look at high-quality evidence (not anecdote) of.

The fringe MS treatment du jour will be a bright, burning flash in the pan (CCSVI). The real deal will stand the test of time, be replicable, and reach acceptance. There's no lightning is a bottle at the moment. There just isn't. We modify our disease, we treat our symptoms, and we live our lives.

[Andipw3]

Ah! Ok.. That's what I needed.. Ty!

[4happygnomes]

I had my b12 levels checked with the hopes that that was the root of all of my issues.  According to the functional nutritionist I saw, the best measure for checking your b12 is to test Methylmalonic Acid, standard blood tests only show what is available in your blood, that tests how much your body is actually utilizing.

[Andipw3]

Here's my question however. How do you know what your levels are unless your blood is testrd.. AND from what in reading.. Supposedly.. MS patients are lower than the general population. SO.. That means.. When we are checked.. We're going against the otherwise healthy individual. IF it's even true.. That we ( ms) are unable to retain the b12 like otherwise people would. And being  it is essential for the nervous system.. I'm wondering why the focus is on vitamin D so much? Important yes I know..bome  health. But.. What about the cns? That is , after all, what needs attention. Do I make sense???

[Corriel]

Oops, I should also mention that the naturopath wanted me to have the higher dose for better absorption. She was disappointed that my GP didn't do the B12 shots.

My GP's opinion is that if the vitamins were working there was no need to do injections because it meant my body was absorbing. I see both sides but since I can't claim the supplements, I wouldn't have minded frequent doc visits for shots.  :)

[Corriel]

I take sublingual B12. My B12 was 156 a couple of years ago and I tried taking OTC supplements. After a few months I got up to 200 on my blood test level but a naturopath suggested a high dose sublingual and I have gotten my range up to 350 and holding steady.

I think the strongest OTC pill I could find was 1250 mcg and the sublingual I take is 5 mg (not micrograms) but I take it only every other day.

I may have to check out a patch at my local health food store and see what the scoop is on them. Sublingual or not, I'm tired of pills/supplements.  :)

Corrie

[HVAC]

I take sublingual B12

Alex

[Andipw3]

Yes, I'm not one to take anything unless needed.. But I guess the argument is that you can't even get accurate b 12 levels in a blood test. But more accurately in the spinal fluid..? As if that's an option for everyone!?!  But apparently , being that b 12 is not made in the body.. You can't really " overdose" on it , becoming toxic. And to make it more confusing... Now... I'm reading that MS is not even considered auto immune anymore. Which probably is another question I could ramble about in another thread!! I think even nmss posts the change in dialogue. I'll look it up. And my husband still wants me to ask about the estriol. It's not out yet I dont think..

[essdipity]

I'd think this would depend on how low the B12 level is, and what the doctor recommends. It used to be that shots were given or were administered by the patient, as this uses the vitamin very efficiently, and pills don't. Newer pills seem to be better on this score. Some people use the sub-lingual variety, supposedly better than pills in terms of absorption, but there's controversy about this approach as well.

I guess a patch would be useful if continuous, even levels of the vitamin are important, but I don't know whether that's true, or whether just a daily amount works just as well. For me, I'd go for shots if I were really low. This solution can often be temporary, since after the level in the blood is satisfactory, pill supplements can take over from there.

ess