B12 Deficiency - Ms - Neuro Symptoms - Discussion

[ShayFL]

I know there have been threads on this in the past. But they get buried and new people are on all of the time, so I want to discuss B12. I am doing some research and will post it in here.

Everyone please relay your experiences with B12 deficiency and supplementations/injections, etc.

Hey AliB - found support that low gastric acid leads to B12 deficiency which goes right along with what you are researching right now.

B12 deficiency attacks numerous body systems (neurologic, hematologic [blood], immunologic [immune system], vascular, gastrointestinal, musculoskeletal, and genitourinary), so the signs are symptoms are many--- but everyone is different on how they present-- and they can predominate in one system.

Typically B12 deficiency strikes the neuro system and people exhibit neuropsychiatric manifestations. So anyone with neuro or psych signs and symptoms must be tested for B12 deficiency:

---paresthesias (numbness or tingling to extremities)

---dizziness

---balance problems

---gait problems

---clumsiness (incoordination)

---frequent falling

---tremor

---muscle spasticity

---visual problems

---impaired fine mortor coordination

---nocturnal cramping in arms and legs (like restless leg syndrome)

---bladder-bowel incontinence (advanced--when B12 def. has been undiagnosed or misdiagnosed for an extended period of time)

psych problems

---depression

---apathy

---irritability

---poor memory, memory loss, cloudy thinking

---confusion, disorientation

---dementia

---paranoia

---delusions

---violent behavior

---suicidal ideations

---hallucinations

---psychosis

Other common signs and symptoms

---fatigue

---weakness

---falls

---pallor

---anemia (but you do not have to have--- which fools doctors

---sore tongue

---weight loss

There are more signs and symptoms--- but B12 deficiency attacks the myelin and is a demyelinating disorder---- similar to multiple sclerosis. That is why there are so many neuro signs and symptoms.

If B12 deficiency diagnosis is made late--- and people suffer from signs and symptoms for some time--- they may suffer permanent neurologic injury.

[GlutenGalAZ]

My dr tested me for some vitamin deficiencies....

I am taking B-Complex and a B12 Vitamin now daily ( & a Multi Vitamin). She said that also taking birth control can do stuff with your B vitamines in your body (lower over time / mess around with). I have been taking the vitamines since February and have noticed a big change from how I was feeling.

[MELINE]

I do have most of these neurological problems but my B12 levels are just fine. I don't know what this is supposed to mean, I'll just ask my doctor on my next visit (12 september)

[ShayFL]

Mine were "fine" as well. And my MMA was normal. But after doing some research, I have learned that normal labs do not mean you are not deficient.

I thought having a "normal" MMA via serum was enough. NOPE!

Open Original Shared Link

The urinary MMA is much more accurate and sensitive.

And I am experimenting with taking mega doses of B12 sublingually and transdermally and I am seeing improvement in my neuropathy so far.

[MELINE]

Mine were "fine" as well. And my MMA was normal. But after doing some research, I have learned that normal labs do not mean you are not deficient.

I thought having a "normal" MMA via serum was enough. NOPE!

Open Original Shared Link

The urinary MMA is much more accurate and sensitive.

And I am experimenting with taking mega doses of B12 sublingually and transdermally and I am seeing improvement in my neuropathy so far.

WOW!!!!!! This is why we have to post everything!!! cause someone may propose a different- totally unexpected view of things....WOW again!!! I could never imagine that this could be possible. I've printed the article to give it to my doctor on my 12 september visit.Thank you so much, this was sooooooooooo helpful.

Meline

[ShayFL]

Im going to find out how to get a urinary MMA. Now I am curious.

[Beth in NC]

Im going to find out how to get a urinary MMA. Now I am curious.

Shay, you did see where this particular company does them, didn't you? I'm interested now as well. I had a B12 test done yesterday and it will be interesting to see what it says.

[glutenfreegirl]

Hi there I too was diagnosed with very very low B12 had a lot of the mentioned symptoms that just got worse and worse ...started injections and with in a few weeks started to feel much better then about a month in hte injections started to make me feel ill so I have since switched to B12 sublinguals high dose though 5mg per day to keep me levels up so I can heal and then hopefully lower the dose later....

I have had am mma urine done your Dr should be able to run it or any naturalpath can also order the req for it it will tell you if your cells are absorbing the B12 mine where not but I think now that we have solved the problem in time that will switch as my intesting and stomach heal...man It is so nice to feel well after a meal and not ill and bloated ...yeh us for taking our health into our hands it is just to bad that it is such an unrecognized illness and such ignorance out there about it I even know people who I am so sure have it and when I mention getting tested to them they are like oh no I am fine...OK

If you want anymore info on the MMA or B12 let me know and I will be happy to help you

other wise embrace this wonderful day

[georgie]

If B12 deficiency diagnosis is made late--- and people suffer from signs and symptoms for some time--- they may suffer permanent neurologic injury.

Great idea for a thread again. I have permanent damage - subacute combined degeneration of the spinal column secondary to PA. I started complaining of the symptoms 20 years ago but no Dr would believe me. All they did was a basic blood test or Complete Blood Count and me - being naive - assumed that a Complete Blood Count was 'everything'. Would you believe they don't even test for B12 unless your Red Blood Cells look abnormal ?

Subacute combined degeneration of the spinal cord is caused by a vitamin B12 deficiency. (For specific information on vitamin B12 deficiency, see the article on pernicious anemia.)

Subacute combined degeneration primarily affects the spinal cord, but it can also damage the brain, the nerves of the eye, and the peripheral (body) nerves. At first, the disease damages the covering of the nerves (the myelin sheath), which speeds nerve signaling. It later affects the entire nerve cell.

How a lack of vitamin B12 damages nerves is unclear. However, experts believe the lack of this vitamin causes abnormal fatty acids to form around cells and nerves.

You have a higher risk for this condition if you cannot absorb vitamin B12 from the intestines or if you have:

* Pernicious anemia

* Disorders of the small intestine, including Crohn's disease

* Malabsorptive conditions, which can occur after gastrointestinal surgery

Open Original Shared Link

I can only say - read and research!! I found that I needed weekly injections for ages to get some feeling back to my feet. I still suffer terribly. I find the tablets are simply not strong enough and many others say the same. Without ever having a correct Loading Dose of B12 injections - you will never know what good feels like !

You need to learn about Loading Dose and Maintenance Dose .... and don't get given the wrong type ...

Also consider the Pernicious Anaemia Society and the hard work they are doing - trying to make this condition known. As PA is autoimmune and can be linked to other autoimmune diseases like Celiac - it is important to consider it as a cause. Especially if you have a family history of low B12. The PA Society needs members and support. Its free ! Open Original Shared Link Log into their Forums. They are fighting this at the highest levels and with Awareness Week coming up in September for PA people - this is a timely reminder for everyone to be tested and read the tests themselves !! Don't let the damage become permanent !!

[georgie]

Im going to find out how to get a urinary MMA. Now I am curious.

Open Original Shared Link

Also links to Sally Pacholok's book ' Could it be B12'

And this is a good link. Open Original Shared Link

Theoretically, in Celiac Disease, a B12 deficiency will eventually self correct once the intestinal damage is healed. However, because it is very possible to have co-existing Pernicious Anemia, one should never risk stopping B12 supplements without careful monitoring of B12 levels...for the rest of your life.

[ShayFL]

I self pay labs....what I meant was I was going to check with the labs I use to see if they offer the uMMA and the price. If it isnt too expensive then I will get one done.

I am front loading right now as best I can without injections. Will be interested to see what my uMMA shows on my high sublingual/transdermal dose.

I had injections in the past, but when they didnt seem to be working after 2 months, Doc. said stop. Maybe I needed them EVERY week like you got instead of every 2 weeks and for a longer time.

Someone in another thread said they got injections for 3 years for resolution.

[ShayFL]

Toxicity

No toxic or adverse effects have been associated with large intakes of vitamin B12 from food or supplements in healthy people. Doses as high as 1 mg (1000 mcg) daily by mouth or 1 mg monthly by intramuscular (IM) injection have been used to treat pernicious anemia without significant side effects. When high doses of vitamin B12 are given orally, only a small percentage can be absorbed, which may explain the low toxicity. Because of the low toxicity of vitamin B12, no tolerable upper intake level (UL) was set by the Food and Nutrition Board in 1998 when the RDA was revised (6).

[ShayFL]

Oh and get this. If you have adequate or high Folic Acid, it can mask the B12 deficiency. So the damage happens unnoticed until you are really far gone. It is with these symptoms that we finally get tested for B12 when the deficiency may have been there for years masked by Folic Acid.

My Folic Acid was sky high off the charts because I have always eaten tons of green leafy veggies. Plus a lot of things are fortified with folic acid, not to mention most multis have at least 400 a day folic acid.

Something to consider. Get both tested.

[RiceGuy]

Thanks ShayFL for starting this thread. Sometimes I feel like I'm harping about B12, but as the posts on this thread show, such a deficiency really mustn't be ignored.

I think my symptoms were also masked by folic acid, until intestinal damage was so bad, that all those veggies I eat weren't getting digested much at all. Now, so many areas of health have improved, from nails and eyesight, to sleep patterns and motor function, I feel remiss if I don't start listing things whenever the subject comes up.

One important thing is to get the right form - methylcobalamin. It's sad that most supplements do not contain this type. The sublingual lozenge type is better than the liquid too, because most of the liquid is swallowed, rather than getting absorbed into the bloodstream from under the tongue. Bypassing the digestive tract means bypassing problems with the stomach and intestines, including Pernicious Anemia.

[georgie]

I had injections in the past, but when they didnt seem to be working after 2 months, Doc. said stop. Maybe I needed them EVERY week like you got instead of every 2 weeks and for a longer time.

I probably should have had them twice a week....as symptoms returned. In those early days my symptoms would return after 4 or 5 days . It also depends what type of B12 was injected. There are 3 types and some people need one type more than another. I found Hydroxocobalamin injections + daily methylcobalamin tablets to be the best solution for me.

My Folic Acid was sky high off the charts because I have always eaten tons of green leafy veggies. Plus a lot of things are fortified with folic acid, not to mention most multis have at least 400 a day folic acid.

Something to consider. Get both tested.

Yes - and make sure Red Cell Folate is being tested. Serum Folate can fluctuate a great deal from day to day depending on the food eaten the previous day. RCF is more accurate.

I am front loading right now as best I can without injections. Will be interested to see what my uMMA shows on my high sublingual/transdermal dose.

Have you searched Pubmed ? There are over 1000 links to B12 tablets and how they can correct a deficiency. In Sweden they are used a lot but most countries still hang onto the idea of B12 injections. I am undecided. I take both tablets and injections and I feel that the injections do work better. I need about 10,000 mcg a day of methylcobalaim to even come near what a 1000mcg injection can do to remove the feet tingling. And I still responded this week to the injection .....nerve tingles had been bad for a week despite my high dose of tablets. Its my opinion that if there is a severe deficiency that only injections can work fast enough - tablets being milder and taking longer to gain full effect.

And remember that the tests for B12 are not intended to guide the dose. Once you start B12 supplements - the serum tests are not accurate. If you have Pernicious Anaemia - you need the same dose of B12 for life. And as the tests for PA are only 60% accurate at best - you can have PA and never be formally dx with it.

[LDJofDenver]

I do have most of these neurological problems but my B12 levels are just fine. I don't know what this is supposed to mean, I'll just ask my doctor on my next visit (12 september)

Maybe google Gluten Ataxia, and take a couple of those articles with you to your doctor appointment.

Especially if you have the following, and expecially if you have them while having NO B12 deficiency:

---paresthesias (numbness or tingling to extremities)

---dizziness

---balance problems

---gait problems

---clumsiness (incoordination)

---frequent falling

---tremor

---muscle spasticity

---visual problems

---impaired fine mortor coordination

I just recently read about Gluten Ataxia (I was just diagnosed less than 2 weeks ago), and it perfectly explains something that happened to me a year and a half ago. I was just "off" in motor functions -- felt like I'd had a mini mini stroke, or MS. My Dr. sent me for an MRI to rule out MS. Then I went to an ENT to be tested for BPPV. No one (medical) knew what was going on with me. It just gradually got better, then was gone. ( I still have other neuro things like the pins and needles )

Now that I am diagnosed with Celiac Disease, it all makes sense. I doubt my Doctor then ever had a celiac patient, nor ever heard of Gluten Ataxia - but I did keep telling him throughout that I had an adult son with Celiac disease. I'm happy my new Doc just kept going on down the line, ordering blood tests etc, ruling other things out, then on to testing for antibodies to gluten. Finally it all adds up.

[artselegance]

I was diagnosed B12 deficient in December, 2007....Began injections daily for month, then weekly, then every three weeks, at the same time I had to supplement with Folic Acid....After doing research I have added the sublingual m-B12, a-b12, Bcomplex, MegaFolinic and fish oil.....there is a thread at wrongdiagnosis.com that Sally Pacholok started a while back that I visit frequently and that I is where I learned about all the supplements. There are very knowledgeable people there.

While all this B12 business was happening, I was having stomach issues and have taken meds for it forever, but the B12 deficiency is what has lead me to th celiac stuff and getting tested.....and realizing and knowing now that there is an absorption issue.

I just wonder what else I am deficient in vitamins and minerals wise and am just hoping and praying for some answers from the Gastro that I will hopefully see next week.

One person said on that forum that there are three essentials for life and in this order.....Oxygen, Water and B12....

I believe this. I am 45 y/o, have always been very strong, athletic, energetic......this entire year has been life changing for me and I have truly thought I was writhing up and dying at times.....because of B12.....and I had been telling doctors for 3 years I was tired and no energy and no interest in anything because I was so sleepy.....Finally one found my B12 instead of putting my ANOTHER antidepressant....guess what since B12 therapy no antidepressants.....I will be on B12 for life....no on to the tummy.....what's next?