MS B12 Pacemaker

[harrynic]

My docs tell me they are convinced that I have ms. I've had the symptoms for years but wrote them off to side effects from meds. When I went over the list of symptoms with my doctors--finally--saying "I am spiraling downward," and they observed my spasms, trembling, and then the double vision...well, you all know the story. I can't play my piano anymore.

But I'm not convinced entirely. I can't do an MRI because of the pacemaker. Reading this forum I see that most ms diagnoses are probably B12 deficiencies. I've been taking B12 daily for years and years. As well as anti-seizure meds--which could produce some of the symptoms.

Anyone been through a similar situation? Do I ask for a PET scan?

I'm pretty shut down about this and am just trying to approach it rationally. When I can stay awake. But things are getting worse and worse. I'm having trouble getting into cars now and getting up from chairs and bed. I'm a pretty positive person, so when I know what I'm dealing with I'll cope well. But being in this confusing place is making me feel isolated from people, and I have a loving partner who I don't want to do that with. Any help appreciated. Thank you all.

[NHE]

I've been taking B12 daily for years and years.

Are they oral tablets or sublingual tablets? The reason I ask is if they're oral tablets, you could have an absorption problem and sublingual tablets could work better for you. The methylcobalamin form is best. Also, have you ever had your B12 & homocysteine levels tested? If so, what were the numbers?

[THX1138]

I've been taking B12 daily for years and years. As well as anti-seizure meds--which could produce some of the symptoms.

Anticonvulsants (also commonly known as antiepileptic drugs or as antiseizure drugs) are a diverse group of pharmaceuticals used in the treatment of epileptic seizures.

http://en.wikipedia.org/wiki/Anticonvulsant

Antiepileptic drugs interact with folate and vitamin B12 serum levels.
Linnebank M1, Moskau S, Semmler A, Widman G, Stoffel-Wagner B, Weller M, Elger CE.
Author information

Abstract
OBJECTIVE:
Antiepileptic drugs (AEDs) are important for the treatment of epilepsy, psychiatric diseases, and pain syndromes. Small studies have suggested that AED treatment reduces serum levels of folate and vitamin B12.

METHODS:
This prospective monocenter study aimed at testing the hypothesis that AED treatment is associated with folate and vitamin B12 serum levels in a large population. A total of 2730 AED-treated and 170 untreated patients with epilepsy and 200 healthy individuals were enrolled.

RESULTS:
Treatment with carbamazepine, gabapentin, oxcarbazepine, phenytoin, primidone, or valproate was associated with lower mean serum folate levels or with a higher frequency of folate levels below the reference range in comparison with the entire group of patients, untreated patients, or controls. Treatment with phenobarbital, pregabalin, primidone, or topiramate was associated with lower vitamin B12 levels compared with the entire group of patients. Vitamin B12 serum levels were higher in patients treated with valproate compared with the entire group of patients, untreated patients, and healthy controls. Folate or vitamin B12 levels below the reference range were associated with higher mean corpuscular volume (MCV) and higher homocysteine plasma levels. Vitamin substitution for 3 months in 141 patients with folate or vitamin B12 levels below the reference range yielded normal vitamin levels in 95% of the supplemented patients and reduced MCV and homocysteine plasma levels.

INTERPRETATION:
Treatment with most of the commonly used AEDs is associated with reduced folate or vitamin B12 serum levels and is a risk factor for hyperhomocysteinemia. Oral substitution is effective to restore vitamin, MCV, and homocysteine levels.

Copyright © 2011 American Neurological Association.

http://www.ncbi.nlm.nih.gov/pubmed/21246600

[ElliotB]

"most ms diagnoses are probably B12 deficiencies"

I would imagine that most people diagnosed with MS by a doctor do indeed have MS.

Perhaps you should make the assumption you have MS and do what you can for yourself aside from starting on a DMD which would require a doctor's diagnosis and prescription - there are many options available to you to help you feel better whether you have MS or something else.

Have you considered having a LP?

[THX1138]

I would imagine that most people diagnosed with MS by a doctor do indeed have MS.

Maybe. But the doctors doing the diagnoses have, on average, only 23.9 hours of training in nutrition.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430660/

[Alainaluvsu]

If you're not going to trust the diagnosis of a doctor, why would you even waste the money to talk to one?

I'll also add that sub-lingual administration offers a burst effect with a spike and higher levels, but a more rapid deterioration of the vitamin, as opposed to an oral method which offers a slow-release effect which is opposite of a sub-lingual administration.

[THX1138]

If you're not going to trust the diagnosis of a doctor, why would you even waste the money to talk to one?

As for myself, I had a lot of trust in the medical community when I was diagnosed. But as the years progressed and the inability of the doctors to help me became disturbingly obvious, I increased my study and experimentation. Now I generally view the medical community as a resource to help me figure things out and fix them. I do not blindly go for a treatment just because a doctor recommends it - I check it out myself, too. This obviously does not work very often in emergency situations. however.

[THX1138]

I'll also add that sub-lingual administration offers a burst effect with a spike and higher levels, but a more rapid deterioration of the vitamin, as opposed to an oral method which offers a slow-release effect which is opposite of a sub-lingual administration.

What is your take on B12 injections

[harrynic]

Thanks for all the responses. It's nice to share news of this diagnosis by my doctors with someone besides my partner. I'm not ready to share it with friends yet, at least not until the lumbar puncture. It seems in a way that this forum is a B12 deficiency forum and I'm wondering if that's just a necessary result of being an ms forum? I know I'm going to need to talk about this to friends soon, and siblings. Just not ready yet. And of course now I'll be able to tell them it's probably a B12 deficiency--even though my doctors said I did not have a B12 deficiency. Oi vey.

[THX1138]

And of course now I'll be able to tell them it's probably a B12 deficiency--even though my doctors said I did not have a B12 deficiency. Oi vey.

I would not go that far just yet.

It sounds like you may just have a B12 deficiency.

The significance of B12 and MS is that, sometimes B12 issues are misdiagnosed as MS. And while MS is mysterious and reportedly incurable, B12 issues are easy to cure - if they are properly diagnosed. But B12 issues are often misdiagnosed .

[lyndacarol]

The cause of MS is unknown.

There are many hypotheses as to the cause of the set of MS symptoms (which are common to many conditions), a B12 deficiency is just one possible cause. MS is a diagnosis of exclusion. If your doctor has thoroughly ruled out B12 deficiency, move on to the next possibility and rule them out one by one.

[lyndacarol]

As for myself, I had a lot of trust in the medical community when I was diagnosed. But as the years progressed and the inability of the doctors to help me became disturbingly obvious, I increased my study and experimentation. Now I generally view the medical community as a resource to help me figure things out and fix them. I do not blindly go for a treatment just because a doctor recommends it - I check it out myself, too. This obviously does not work very often in emergency situations. however.

Agreed!!!

[THX1138]

harrynic, No one here is suggesting that you go against your doctor's advice for treatment.

It is just that what your doctor has to offer is far from all there is.

[Alainaluvsu]

What is your take on B12 injections

Injections generally are a more effective method of absorbing any substance, since it does not go through the metabolic process before reaching your blood stream (getting splashed with acids before getting to the blood is going to lessen the amount of it).

[DrGeoff]

You do NOT need any MRI scans for a Dx of MS.
The big thing about MRI scans is that they are very easy for the physician to call for, and they can indicate the presence of lesions - making the Dx easy.

A full physical neurological examination (takes almost an hour) can determine if there are problems in the spinal cord. A quick exam (takes about 20 minutes) is almost as good, and will identify any spinal cord problems almost as well. BUT, this should be done by a neurologist. Anyone can do most of the tests - but it will take a neuro to interpret them.
Couple that to a lumbar puncture (looking for bands in the CSF), and you can get close to a Dx without an MRI.
Add in any evidence of relapses (which can take many forms) an the Dx can be as accurate as is needed.
Look up the McDonald Criteria - these are the gold standard for a Dx.

If you cannot find them, send me a PM as I have a copy in PDF format.

A quick course of B12 injections can be a good idea while you are waiting for bloods to come back - and will not do you any harm