sore tongue

[lea78]

I have experienced dry mouth more and more since my diagnosis and now my tongue is sore, almost feels like i have burned it, or like small mouth ulcers but cant see any. There appears to be a red patch which is fairly small. I am seeing my oral surgeon in 3 weeks so will ask him about it.
Does this seem like a normal effect of dry mouth or is it likely to be infection?

[KellyG999]

Hi Lea78.

I am not sure if it's normal or not, but when I am having an especially rough time with sjogren's, my whole mouth burns. I describe it to my husband this way: it feels like I gargled with acid. It is very uncomfortable and unsettling. What's worse is that nothing helps and most things (tea, food, soda) all seem to make it worse. During those times, all I can do is sip water and hope it runs its course fast. Good luck and take care.

KellyG

[4Kids]

My tongue gets scaled feeling and red looking when thrush begins. I have a very dry mouth, especially at night, and I am a mouth breather. My Dr had the pharmacy make me nystatin trouches and thry have fixed the problem. I need to use one at night though since that is the trouble for me. Hth.

[Nat]

Part of the disease process of sjogrens involves the inability to metabolize B12. Here is some information on how a B12 deficiency can lead to a sore mouth and tongue, periodically accompanied by a bitter or metallic taste.

http://www.cigna.com/individualandfamilies/health-and-well-being/hw/medical-topics/burning-mouth-syndrome-nord234.html?redir=/healthinfo/nord234.html

Studies show that sjogrens patients  lack B12. The problem is in the metabolism, not the amount consumed, either in supplement or natural form. In fact, a recent study in Norway found that if you take B12 and folic acid in supplement form, you will greatly increase your risk of cancer. Having high serum (blood) levels of B12, does not correlate to high cellular levels. You can buy all the flour you want to bake a cake, but if you don't mix the flour with baking soda or sugar and have an oven to bake it in, you will never be able to make a cake.

B12 is also responsible for maintaining your myelin sheath. Without sufficient amounts, your spinal cord will begin to degenerate. In fact, the cause of spinal cord degeneration according to the National Institutes of Health is a B12 deficiency.

It is also necessary to maintain your autonomic nervous system. Nearly all sjorgens patients exhibit autonomic dysfunction. (The autonomic nervous system also controls the salivary glands.) One of the neurotransmitters that regulates the autonomic nervous system is acetylcholine. Acetylcholine is derived from choline. Choline is derived from B12 and folate.

The most accurate test for a B12 deficiency is elevated levels of homocysteine. B12 recycles homocysteine. Without it, your homocysteine levels will rise and destroy the endothelial cells. (The cells that line all of your blood vessels). Study after study links elevated homocysteine to COPD (lung disease), migraines, vision problems, Raynaud's, neuropathy and heart disease.

Lack of B12 is not the only problem. B12 is ONLY found attached to dietary animal proteins. I have posted a study that confirms the METABOLISM of B12 is dependant on "appropriate pancreatic enzymes." Without these enzymes, you will never be able to absorb B12 into your cells. You cannot find these enzymes in a pill or bottle. The specific one found lacking in a lupus study I posted is DNase1. These enzymes (called proteases) also break down dietary proteins into essential amino acids. Without essential amino acids, you will not be able to make dopamine, tyrosine, tryptophan, serotonin, melatonin, adrenaline or noradrenaline, or either of the thyroid hormones, thyroxine or triiodothyronine. Lack of these essential amino acids (which have been found lacking in studies) leads to the brain fog, insomnia, fatigue, anxiety, and depression often found in autoimmune sufferers. 

Mountains of evidence and studies from around the world show us clearly the cause and ultimate solution for autoimmune disease. No evidence whatsoever would lead us to believe that the immune system is ever attacking normal tissue. All of the evidence shows (from the abnormal peptides discovered in diabetes and rosacea to biological evidence,that cannot be disputed, found in numerous spinal fluid studies, that the immune system is  targeting abnormally made peptides. (peptides are just short chains of amino acids. An autoimmune sufferer cannot make normal peptides because they lack amino acids) or amyloids. (Misshapen proteins)
I even posted a picture of the abnormal proteins being targeted by the immune system in lupus.

I think it is time common sense and science joined together to solve the mystery of autoimmune disease.

[Scottietottie]

Hi 

I was going to suggest getting the B12 checked too. My mother in law and a friend of mine suffer from pernicious anaemia and burning tongue was one of the symptoms.

Take care - Scottie 

[lea78]

thanks everyone for the replies, my tongue is not sore this morning but has a coating on it which i have had for a long time. If it was sore this morning i was going to see my g.p, but fortunately i have an appointment with the oral surgeon in 3 weeks so will get him to check it. About 3 years ago i asked for my b12 to be tested as i started having muscle twitches. My levels then were ok. It has worried me though because i am vegetarian and often wonder if i am deficient in vitamins.
My sister eats plenty meat though and is deficient in b12 and as the injections.
Thanks again as i am a terrible worrier

[anita]

Lea,

It is possible that you have oral thrush, which is common for those with Sjogren's.  This would not only explain the coating, but it can also irritate the nerves and cause burning.  There are meds to treat this.  Oravig is one.  Your doctor should be able to identify if it's thrush. 

B12 is always good to check, but it's not always the problem.   But keep in mind that a level at the bottom of the the 'normal' range is NOT optimum, especially if you have any neuro problems.  So ask your doctor for the number, not just whether it was normal.  A level of >400 is best.

Let us know what the doctor says. 

[Eleanor]

I tend to get thrush.  For a temporary remedy until you get to a doc or dentist, you might try rinsing your mouth with a 50/50 mix of hydrogen peroxide/water.

[Nat]

Scottie mentioned pernicious anemia and its connection to a sore mouth. Pernicious anemia is caused by a B12 deficiency, as she implied. The reason it can cause a sore mouth and tongue is B12 deficiency impairs DNA synthesis, which affects all proliferating cells. A lack of B12 causes an accumulation of large abnormal cells in the lining of the digestive tract and this is what leads to the sore mouth and tongue.

The lack of B12 and its connection to autoimmune disease can clearly be seen in its relationship to hypothyroidism, which many Sjogren's patients also develop. PERNIOUS ANEMIA OCCURS 20 TIMES MORE FREQUENTLY in patients with hypothyroidism than generally.

Pernicious anemia is one of the most severe manifestations of a B12 deficiency. It occurs at around 200 pg/mL. That is the level at which the US determines as a NORMAL B12 LEVEL. That is like having your engine light go on just as it blows up. Japan sets their normal limit at 500-550 pg/mL. At 500-550 pg/mL you will see B12 deficiency symptoms such as lethargy and dementia.

An overgrowth of pathogenic yeasts and bacteria is also part and parcel of autoimmune disease. A UCLA study found SIBO or small intestine bacterial overgrowths in 95% of the FM/CFS patients tested. Everything is tied together. Once you lose the ability to properly digest proteins, your GI becomes a breeding ground for pathogenic yeasts and bacteria. They feed on the undigested DNA and protein fragments.

[lea78]

Nat, i have had my iron levels tested often, would a lack of b12 show up on them blood tests if it had led to anemia? It all sounds a bit scary to me as i am an anxious person and worry far too much

[Nat]

Lea, the most accurate test for a B12 deficiency is elevated levels of homocysteine. I don't want you to worry. This information could help you reverse the course of your illness. It is a good thing. If you couldn't do anything about it, I would be very reluctant to give it to you. With this information, you will be the one in control, not the disease. You said you were concerned about MS. Here is some additional information  from a doctor that has MS herself.

Vitamin B12, Proteins, and Multiple Sclerosis

I recently read an article written by Julie Stachowiak, Ph.D. (Stachowiak, 2008). I thought she conveyed the connection to multiple sclerosis (MS) and B12 deficiency so well, that I am including parts of her article so that you can read it in her own words.

?When I dabbled in vegetarianism (I was even a pretty strict vegan for about a year), I was able to tell you that vegetarians need to supplement with B12. I couldn't?t really tell you why. I also didn't ever take a supplement. Now that I have multiple sclerosis, I am pretty shocked to learn that a vitamin B12 deficiency is higher in people with MS than those that don?t have MS.?

She continued, ?Studies have reported a significantly higher rate of vitamin B12 deficiency in people with MS than in people without MS, which is suspected to be due to problems with binding and transport of vitamin B12 (meaning that the body does not process B12 efficiently). One study found low B12 levels in the cerebrospinal fluid of people with MS, although their blood levels were normal. People with vitamin B12 deficiency have destruction of both the myelin and the underlying axon. If the deficiency is severe, there can be serious brain damage, causing MS-like symptoms. Even when people have slight B12 deficiency, they may exhibit symptoms like fatigue, depression, and memory loss. Vitamin B12 helps maintain the myelin sheath by playing a crucial role in the metabolism of fatty acids essential for the maintenance of the myelin.?

As she points out, the problem is in the METABOLISM of B12. She also mentions low B12 in the spinal fluid of MS patients, even though the blood levels were normal. This is also true of FM/CFS patients. In studies, nearly all show low levels of B12 and high homocysteine in their cerebrospinal fluid. (And they were US lows, so that means they were severely deficient.)

This is not a difficult problem to resolve. In your case, most likely you are just not eating foods that contain B12. B12 is made by organisms in the soil and is found in high protein animal foods like eggs, meat, dairy and fish. Most autoimmune sufferers however do eat these foods and still suffer a B12 deficiency. That is because they lack the pancreatic enzymes necessary to release B12, and the inability to bind and transport it (intrinsic factor) like Julie Stachowiak states.

[lea78]

thank you for the information, my sister has ms and is b12 deficient, we were both tested at around the same time and shortly after she got a ms diagnosis

[Nat]

All of the symptoms and valid scientific findings associated with MS, can be clearly and completely explained by the lack of pancreatic enzymes to break down proteins into amino acids and to release release B12.
We have identified a lack of noradrenalin and phenylalanine in the pathogenesis of fibromyalgia and thyroid disease. We can also find this same lack of noradrenalin in multiple sclerosis patients. Following is a quote from an article in US News & World Report (University of Illinois at Chicago, 2011).

??Multiple  sclerosis is associated with reduced levels of an important neurotransmitter, noradrenalin. There is a lot of evidence of damage to the Locus Coeruleus (LC) in Alzheimer?s and Parkinson?s disease, but this is the first time it has been demonstrated that there is stress involved to the neurons of the LC of MS patients, and that there is a reduction in brain noradrenalin levels,? said the study?s first author, Paul Polak, a research specialist at the University of Illinois at Chicago.? The study was published online February 4, 2011 in Brain.

Noradrenalin is made in the brain from the amino acid phenylalanine. Phenylalanine is found in high protein foods. If you cannot break down dietary proteins, you will not be able to produce phenylalanine, and that would result in a deficiency of noradrenalin.

Subacute combined degeneration of the spinal cord and dysautonomia would account for almost all of the symptoms of multiple sclerosis. We have demonstrated that subacute combined degeneration of the spinal cord is caused by a vitamin B12 deficiency. Studies have shown a significantly higher rate of vitamin B12 deficiency in people with MS. Dysautonomia is caused by a vitamin B12 deficiency,  and lack of the neurotransmitters adrenaline and acetylcholine,  that regulate the autonomic nervous system. Vitamin B12 and folate are required for the synthesis of choline before becoming acetylcholine. Adrenaline is produced by the body when the body modifies noradrenaline.  MS patients have been found to lack noradrenalin,  as well as B12. This would lead to both subacute combined degeneration of the spinal cord and dysautonomia.

I will find and post a study that shows NINETY PERCENT of the patients tested with MS had symptoms related to autonomic dysfunction. There are numerous studies that confirm this. And also one to show how the lack of B12 in MS leads to elevated homocysteine which leads to cerebral white-matter lesions.

[season]

Nat, is it a good idea to have the B12 injections instead of the supplements if we are deficient of B12.

[Nat]

Here is a study that shows 90% of MS patients had symptoms related to autonomic dysfunction.

http://www.ncbi.nlm.nih.gov/pubmed/12138302

Hi Season,

Taking B12 through injection would not help you to metabolize it. A high serum (blood) level does not correlate to a high cellular level. I posted a study that shows the metabolism of B12 is dependant on pancreatic enzymes. The study is titled: "Cobalamin Malabsorption Due to Nondegradation of R Proteins in the Human Intestine." The first sentence states, "In vivo studies demonstrate that the pancreatic enzymes and the ionic environment in the upper gastrointestinal tract are ESSENTIAL determining factors for TRANSPORT and ABSORPTION of cobalamin (B12) in man.

Study after study shows the major role the inability to absorb B12 plays in autoimmune disease. Getting this corrected is of the utmost importance. Since the inability to absorb B12 is also connected to a lack of amino acids and improperly broken down proteins that illicit the immune response, your enzymes and your GI tract need to be addressed to stop the disease process anyway. Restoring your pancreatic enzymes and healing your GI tract would take care of all three problems.  Taking B12 in supplemental form can greatly increase your risk of cancer, overall disease risk and even death. I will find and post some information on this. Flat out, it doesn't work and it will lead to greater harm.