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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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I will get the sublingual tablets -- thanks!!! Rach, what happened to you is CRIMINAL!! My aunt saw a PT whose father is still in the UK. He is in his 70's and, until recently, hiked and did mountain climbing...UNTIL he developed neuropathy in his feet. The PT feels sure it is a disc -- but, NHS will ONLY do tests (blood work) for diabetes. MRIs, they say, are "reserved" for the young. I think the PT said the MRIs are rationed or something like that? ![]()
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~jana |
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Annie, are the LOZENGES the same as sublingual? If so, do you need to put the lozenges UNDER the tongue or just suck on them (like a cough lozenge) til dissolved??
Many thanks!!
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~jana |
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"Thanks for this!" says: | AnnieB3 (03-22-2014) |
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Wisest Elder Ever
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One does NOT need to do under the tongue....that is old historical nonsense. Studies show today, that oral works fine, as long as you swallow it on an empty stomach and don't follow with food for about an your.
Here is our B12 thread, with all you need to know and some very interesting links (medical) as well. Methylcolbalamin is the preferred type to use now, as we know that up to 40% of adults may have the MTHFR mutation and be unable to methylate (activate) the old synthetic cyanocobalamin type. Methylcobalamin is now in some stores, WalGreen's and Costco. And online at iherb.com, Amazon and some discount outlets. http://neurotalk.psychcentral.com/thread85103.html
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | AnnieB3 (03-22-2014) |
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#4 | ||
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Hi Jana,
They aren't supposed to ration healthcare due to your age, but they do. My husbands mother is in her seventies and was diagnosed with multiple myeloma in 2012. They told her they would treat her symptoms and her life expectancy would be 2-3 years. They kicked up a stink and she's now getting treatment and is doing exceptionally well on it. The thing with any healthcare provider is not to accept NO for an answer. The gentleman you spoke about should be having his B12 checked but many doctors don't think to check it unless you specifically ask. B12 should also be checked in those with mental health conditions as low B12 can be the cause, along with thyroid issues. It seems that only a few doctors are cottoning on to this. Its a crying shame as so much money is being wasted when there is in fact a quick fix. Rach x
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Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." |
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#5 | ||
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Grand Magnate
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And this is where you and I diverge, Mrs D!
![]() I had been taking B12 and I was still deficient (before it was diagnosed). It was only until I began taking sublingual B12 that my numbers went up and my symptoms decreased. Studies are great, but not all patients fit into an algorithm. And, in my opinion, that is one main reason why so many doctors fail. Those same types of studies say that all MG patients should test positive on a SFEMG. Dangerous. Studies say that if you're the third child, you won't be as successful. Nonsense. I'm a third child. Studies said that the world was flat, that bloodletting got rid of a bad behavior, that mammograms don't reduce cancer deaths . . . Should a patient with heart problems swallow a nitro tab for the best possible outcome? (I realize that the drug isn't meant to be swallowed, I'm only making a point.) Some doctors in the UK apparently equate substandard medicine to optimum care. All patients deserve the best possible care. The only thing a patient should be focused on is whether or not they have a disease state and what treatment modalities work for THEM, as an individual, and given their own unique set of physical circumstances. Declaring an absolute doesn't really suit you, Mrs. D! ![]() Annie Last edited by AnnieB3; 03-22-2014 at 02:59 PM. |
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#6 | |||
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Wisest Elder Ever
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What are we talking about, Annie?
Are you saying methylcobalamin is not an improvement for people today? Or are you saying that sublingual works and oral doesn't? There are many studies comparing all 3 modes of treatment, by the response of patients. And all three gave improvements that are very similar. When you do sublingual you dissolve the lozenge in saliva which is then swallowed. So if you do sublingual and that is your choice, you should do it on an empty stomach so any you swallow will also be absorbed. It doesn't really matter how you take the methylB12, but it does matter that the methylB12 should be done. The rate of absorption has been measured by blood tests in volunteers...and that link is on my thread. 1000mcg orally translated to 13mcg absorption into the blood. I've spent years looking for confirmation that sublinguals really deliver, but never found it. Now that methyB12 is so inexpensive, and is still sold for those who want to do sublingual or who want to chew them up and swallow, there is no reason to continue looking. For decades it was not understood that B12 can passively pass thru the intestinal walls without intrinsic factor. But now we know it can. That is why the massive dose... 1000 to 5000mcg to get 13 or a few more mcg into the body. Since only 2-4mcg are the RDA, that is still 3 times the amount needed for us. It might interest readers here that from an injection 1000mcg, only 150mcg were found in the test study. http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4 What is changing rapidly is the data regarding the MTHFR polymorphism genetic errors. At first it was suggested at 10%, but now I am seeing 40% as a possible higher figure. The last person on these boards was a doctor who specialized in this who posted about 3 yrs ago, that 30% was showing up in studies. Also showing up is that about 40% in US are low in B12. This is because of chronic use of acid blocking drugs and the use of metformin for type II diabetes. Birth control pills, some antiretrovirals, and long term use of antibiotics also inhibit B12 absorption. So today this is a growing problem with many people. Many people on our PN board use B12, and many are using methylB12 and swallowing it. Because many companies still make it in that form you can choose to keep under the tongue, you can still choose to do it that way. Just don't do it with food in your stomach, because you will swallow most of it. The success of oral use is in how you take it....it must be taken on an empty stomach with no food following for about an hour after. Chemically B12 is a huge molecule, and huge water soluble molecules don't cross the membranes of the mouth easily or quickly.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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#7 | ||
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Grand Magnate
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I'm not saying either of those things.
If I pound on my chest harder, will it help the discussion? I believe I made my point. And you have made yours. Annie |
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"Thanks for this!" says: | mrsD (03-22-2014) |
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#8 | |||
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Member
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A broad statement cannot be made about the oral vitamin b12 being beneficial for everyone. I am missing the portion of my stomach that manufactures intrinsic factor, so I could take b12 rich food or oral b12 till the cows come home and still be deficient. There are also those who don't absorb it for other reasons. I was told by my gastric surgeon beforehand that I would have to take b12 sublingually or by injection for the rest of my life. Unfortunately methylcobalamin, the more bioavailable form is not always available to me where I live.
Oral b12 may help some but not all. We are not clones and all have individual systems that react differently to different factors. I intend to ask my gastro to check my levels this week and also ask for injectable b12 to see if that makes a difference in my symptoms. |
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"Thanks for this!" says: | AnnieB3 (03-23-2014) |
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#9 | |||
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Wisest Elder Ever
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The link I gave has information about absorption of oral in pernicious anemia patients. They were tested too.
It works for them as for others. That is because some B12 can be absorbed PASSIVELY without intrinsic factor. It is not common to have study subjects for vitamin research. Measuring blood levels, etc to show that passage of the nutrient does occur is costly and just not done. But today we have the data from this B12 study, and also one for magnesium. The magnesium study showed very dramatically that OXIDE forms of magnesium remain in the bowel, and therefore now are being sold OTC as a result by Phillips company, as a laxative only. Here is the link showing the table including the pernicious patients. http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4 Look carefully at this table...The far right hand column represents the pernicious anemia and other malabsorption patients, and at 1000mcg they absorbed 12 mcg and the normals 13mcg. Manufacturers of the various supplements rarely provide this type of data. (The data from RX drugs does provide absorption and also in more detail, which costs mega bucks ). There is one other example we at PN forum know about and that is the data on absorption of the r-lipoic acid solubilized (NaRALA) provided by that manufacturer compared to the old racemic form of alpha lipoic acid that has been around for 20+ yrs which is poorly soluble in the aqueous environment of the human GI tract. This example is only about 2 yrs old...and only a few manufacturers at this time are providing to consumers this new improved type. So while one can still choose injections, it might be best to have the methylcobalamin in that option as well. This typically still is done at compounding pharmacies, and needs refrigeration in that form. So I think we are quite lucky to have access to this one study by a doctor published to read and help in making decisions.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | AnnieB3 (03-23-2014) |
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#10 | |||
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Wisest Elder Ever
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Be advised when you have your testing to stop all vitamins you take at least 5 days before the test. This is to avoid factitious elevations. Also the range still used by doctors and most labs still goes down to about 200pg/ml. The Continuing Ed sites for physicians suggests a minimum of 400pg/ml in neurological patients. (the AAFP site is one example) This was started by Dr. Christopher Snow, and I have a link to that AMA paper from the late '90's explaining why.
It is in the first post of my B12 thread on PN. So it is best to get your numberical result and not just comments like "normal" or "okay". You may be below 400pg/ml in that case. Another good source of B12 research information, is India. They have many products given by doctors orally now containing methylcobalamin. They seem to have huge numbers of people with marked low B12, including children, because of the vegan lifestyle and perhaps other cultural factors. In fact one recent poster here asking for more information about supplemental treatments listed her products and one of them was an oral methylB12 product: http://neurotalk.psychcentral.com/thread202374.html Meganeuron OD Plus I found interesting research papers over a decade ago coming from India. Quote:
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | AnnieB3 (03-23-2014) |
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