• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The difference between MS and ME

Messages
84
Location
Tennessee
From what I have read, the symptoms of MS and ME are very similar. The triggers for both MS and ME can be the same also. Also, an MRI always doesn't show lesion of a person w/MS. I am very confused only because not any doctor has been able to give me a diagnosis. The fatigue was the last symptom that hit and technically, according to the CDC and my doc the fatigue pre dates the other symptoms. Has this been the case for any of you where you had other symptoms prior to the fatigue? I am really at the end of my rope. I would just like to know. I have children and I think it is important for them.

Symptoms

muscle twitching, tingling and numbness..... First set of symptoms
Few months later...... Dizziness, Nystagmus low blood pressure
And then about 4 months later, the crushing dibilating fatigue and brain fog

I do appreciate you're feedback. I have had improvement, but and a big but, All is not well
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Lee Ann, I can recall reading (but not where) from an MS expert who had many ME patients that he could not always tell the difference. Some patients were clearly ME, some clearly MS, but most were on a spectrum between. There has been some work on blood tests that might tell the difference. Some of the genomics or proteomics research for example might lead to a differentiating test. However, at the moment, the only test I am aware of involves RNase L. Both MS and ME have elevated short form (37 kDa) RNase L. However, MS (and rheumatoid arthritis) is typically without high elastase, but in ME it is typically with high elastase. I do wonder about diagnoses though. This test might be arbitrary if the distinction between MS and ME is as problematic as I think it is. I am guessing that only a detailed looked at secondary factors can tell the difference, although the time couse of MS is more likely lethal but less disabling (higher motality, less morbidity). It is the genomics and proteomics that will give us the final answer. Bye, Alex
 

Enid

Senior Member
Messages
3,309
Location
UK
Pretty similar pattern to you Lee Ann except dizziness initially - MRI brain scan showed "high spots". My Neurologist considered MS (also Polio) but couldn't confirm either. Wish I could be more help except that things have improved over time (and following advice from experiences/treatments for ME.)
 

richvank

Senior Member
Messages
2,732
Hi, Lee Ann.

I recommend that you get the methylation pathways panel from Health Diagnostics run. It costs $295, including the mailer for sending the blood samples to the lab. It will tell you whether you have glutathione depletion and a partial methylation cycle block. If you do, nonprescription treatment is available and is currently helping a lot of people. I am not financially involved with the testing or the treatment. Here is the contact information for the panel:

Methylation Pathways Panel

This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

The panel requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on a clinicians letterhead.


Available from:

Health Diagnostics and Research Institute
540 Bordentown Avenue, Suite 2300
South Amboy, NJ 08879
USA
Phone: (732) 721-1234
Fax: (732) 525-3288

Lab Director: Elizabeth Valentine, M.D.

Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone.


I have also written a guide for interpretation of this panel, which is available in Part 7 of my document in the General Wike section of these forums.

If you want to know more about the rationale behind this testing and treatment, I encourage you to view the video and/or read the slides at this website:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

Best regards,

Rich
 

CAcfs

Senior Member
Messages
178
Considering the tingling/twitching/numbness and all that, I would definitely check out Lyme considering you live in Tennessee. Even though a lot of doctors aren't very familiar with Lyme's presence there, it is indeed in your state. Many patients do not recall a tick bite or rash, who end up testing positive. Sometimes a tick will bite and fall off, and not leave the popular rash, is my understanding. Bloodwork can also show false negatives, keep in mind.

If these symptoms began in spring through fall, any time between there (which would be earlier in spring and later into fall for you when ticks are active, considering you are not in Northeast where weather is worse), that would lend even more credence to the idea. Though I understand you can get Lyme any time of year. Just more likely certain times of year. Also, if you don't go outdoors much, pets can bring them indoors on their fur.
 
Messages
84
Location
Tennessee
Thank you all for your feedback. It is very helpful.
Rich, I have had two MTHFR?? test and both have been normal or negative. Not sure what labs
 

Annesse

Senior Member
Messages
164
Here is a study on B12 and MS. http://www.ncbi.nlm.nih.gov/pubmed/1898255

The researchers believe the problem lies in "the binding and transport".

The other symptoms you mention-dizziness and low blood pressure- could be autonomic nervous system dysfunction. This is seen in both MS and CFS also. In fact, in the study titled, "Autonomic Dysfunction in Multiple Sclerosis: Correlation with Disease-Related Parameters," NINETY PERCENT of the patients had symptoms related to autonomic dysfunction.

Here is where it gets interesting. One of the neurotransmitters that controls the autonomic nervous system is acetylcholine. Acetylcholine comes from choline. Choline comes from B12 and folate.

Your last symptoms are fatigue and brain fog. I just posted a study that was recently published under the " latest research- British Journal Radiology" entitled, " Vitamin B12, cognition, and brain MRI measures." It states in the conclusion, "Vitamin B12 status may affect the brain through multiple mechanisms."

The fatigue? B12 is also associated with that. It is often called the energy vitamin because it helps fat and protein to metabolize in your body. It also plays a major role in the conversion of carbohydrates to glucose-your body's source of fuel. In addition, B12 enables your body to convert fatty acids into energy.

You will find the inability to metabolize B12 in nearly every autoimmune disease. That is why the symptoms are so similar.
 

Annesse

Senior Member
Messages
164
Here is an additional study that shows even at an extremely low level tested, 40% of patients with hypothyroidism have a B12 deficiency. The level tested was 133 pg/mL. At three times that level, you will see B12 disease symptoms such as dementia. What would the deficiency rate have been if they would have tested at a level you don't find disease symptoms? Even at this extremely low level they still found 40% of the patients were deficient.

http://www.ncbi.nlm.nih.gov/pubmed/18655403

Nearly every autoimmune disease shows a methylation block due to this deficiency. What is at the root of the body's inability to metabolize B12 in autoimmune disease? Answer this question and I believe you will solve the CFS puzzle.
 
Messages
15
I have found this document on the web site `The Hummingbirds` Foundation for M.E.` very useful when comparing the similarities and differences between M.E. and MS
http://www.hfme.org/PDF/ME_vs_MS.pdf
I also have a very close friend who has MS and although we have some similarities we also have different symptoms. She also aknowledged that I am a lot worse than her!
 

richvank

Senior Member
Messages
2,732
Here is an additional study that shows even at an extremely low level tested, 40% of patients with hypothyroidism have a B12 deficiency. The level tested was 133 pg/mL. At three times that level, you will see B12 disease symptoms such as dementia. What would the deficiency rate have been if they would have tested at a level you don't find disease symptoms? Even at this extremely low level they still found 40% of the patients were deficient.

http://www.ncbi.nlm.nih.gov/pubmed/18655403

Nearly every autoimmune disease shows a methylation block due to this deficiency. What is at the root of the body's inability to metabolize B12 in autoimmune disease? Answer this question and I believe you will solve the CFS puzzle.

Hi, Annesse.

I don't know about the autoimmune diseases, but in ME/CFS I believe that the functional deficiency in B12 is caused by glutathione depletion. Glutathione has been found to participate in the intracellular processing of B12 as well as to protect it from reactions with xenobiotics. There is recent published literature about this. If you want to find out more details, I encourage you to view the video and/or slides from a recent seminar I presented in Sweden:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

Best regards,

Rich
 

Annesse

Senior Member
Messages
164
Thank you for your reply Rich. I did view much of your video. It is very impressive. I think the connection you have made to autism and CFS though can be made throughout the entire spectrum of diseases that share the same symptoms. In fact, I believe they are just that, symptoms that share a commom cause. For instance, who would have thought, until you made the connection, that autism and CFS had a methylation block. I believe it is the symptoms of a disease that tell us where it originates.

Why do MS and CFS share so many identical findings and symptoms? Why does nearly every autoimmune disease lead to other autoimmune diseases or diseases not typically thought of as autoimmune diseases like fibromyalgia or CFS. For instance, The National Fibromyalgia Association states, "Patients with established rheumatoid arthritis, lupus, and Sjogren's syndrome often develop fibromyalgia during the course of their illness." (Bennett,2009)

The spinal fluid of fibromyalgia patients reveals that they too suffer from a B12 deficiency with resulting high homocysteine. In additional spinal fluid studies on CFS and Fibromyalgia we saw identical protein findings consistant with low B12 and high homocysteine such as "problems with the vasoconstriction of the blood vessels and damage to the cells lining the blood vessels (the endothelial cells)."

The feature of low B12 can be found in nearly every autoimmune disease (and CFS). MS, hypothyroidism, fibromyalgia, CFS, and here is one on Sjogren's.
http://www.ncbi.nlm.nih.gov/pubmed/20144108

Studies are showing the reason for low B12 in these diseases is found in the "binding and transport". I believe this is very significant. If EVERY symptom of autoimmune disease and EVERY biological finding could be traced back to the same thing responsible for the binding and transport of B12, then I believe we will have discovered the cause itself of these diseases.
 

richvank

Senior Member
Messages
2,732
The spinal fluid of fibromyalgia patients reveals that they too suffer from a B12 deficiency with resulting high homocysteine. In additional spinal fluid studies on CFS and Fibromyalgia we saw identical protein findings consistant with low B12 and high homocysteine such as "problems with the vasoconstriction of the blood vessels and damage to the cells lining the blood vessels (the endothelial cells)."

Hi, Annesse.

It this from the study by Regland et al., or another study. In the Regland study, the patients all satisfied the diagnostic criteria for both FM and CFS, so I don't think it is possible to say from this study whether there is a B12 abnormality in "pure" FM. Have I misunderstood this?

Rich
 

Annesse

Senior Member
Messages
164
Rich, I believe based on the recent identical abnormal spinal fluid protein findings that CFS and Fibromyalgia are one and the same. Not really separate diseases, but rather a cluster of symptoms that originate from the same source. Here are some of the research findings in fibromyalgia.

Dr. Patrick Wood (Scientific advisor for the National Fibromyalgia Association) has found that fibromyalgia patients lack dopamine, have low iron and spinal cord changes.

Dr. Lavin, another well known and respected fibromyalgia believes that "dysautonomia explains ALL FM features".
The study I posted above shows that 90% of MS patients also suffer with dysautonomia.
CFS patients also have many symptoms of dysautonomia.
There is a study to be conducted by the NIH to see if Sjogren's is actually a dysfunction in the autonomic nervous system. Secretion of saliva is under control of the autonomic nervous system, which controls both the volume and type of salvia secreted. Also, in the study entitled, " Autonomic Nervous Symptoms in Primary Sjogren's Syndrome" concludes Sjogren's patients showed subjective and objective signs of both a parasympathetic and a sympathetic dysfunction.
In the study entitled, "Autonomic dysfunction and hemodynamics in vitamin B12 deficiency," researchers concluded, " The results suggest that vitamin B12 deficiency causes autonomic dysfunction with similar hemodynamic consequences and patterns of autonomic failure as seen in DIABETIC AUTONOMIC NEUROPATHY. "

The prototype of dysautonomia is beri-beri. (lack of B1) Here is the thing though. You can't absorb B1 if you lack B12. It is excreted in your urine.

Also, one of the neurotransmitters for the autonomic nervous system is acetylcholine. Acetylcholine comes from choline. Choline comes from B12 and folate.
In fact, another autoimmune disease -Myathenia Gravis- is caused in part by a lack of acetylcholine. Prisoners of war that developed Myathenia Gravis actually recovered by eating large amounts of liver. (B12 is stored in an animals liver)

The spinal cord changes found by Dr. Wood in fibromyalgia can also be seen in lupus. According to the Lupus Foundation of America, in about half of those with lupus, the disease attacks the brain and spinal cord. Science has not yet been able to provide an explaination for this. Of course we see brain and spinal cord changes in other autoimmune diseases as well, such as MS.

According to the NIH, subacute combined dengeneration of the spinal cord is CAUSED by a B12 deficiency.

If you look at these diseases as a whole, you will see a pattern.
 

richvank

Senior Member
Messages
2,732
Hi, Annesse.

I think that's very interesting. I would really like to understand fibromyalgia.

As you may know, Amy Yasko has connected methylation problems (and hence B12 involvement) to several of the adult neurological diseases, also. I've been focusing on ME/CFS, but it does seem as though this part of the metabolism has wider applicability to other diseases. I would like to understand why B12-related problems manifest in so many different ways. Perhaps it is due to differing genetic polymorphisms.

Best regards,

Rich
 

Annesse

Senior Member
Messages
164
I am sure you all already know this, but here is a study on CFS and autonomic dysfunction that states, " Symptoms of autonomic dysfunction were strongly and reproducibly associated with the presence of CFS... http://qjmed.oxfordjournals.org/content/100/8/519.full

The other neurotransmitter that regulates the autonomic nervous system is adrenaline. Do we find a lack of adrenaline in these other associated diseases?Yes, we do. Dopamine was found lacking by Dr. Woods in fibromyalgia. Dopamine is the precursor to adrenaline. Also, MS is associated with reduced levels of noradrenaline. (dopamine is the precursor to adrenaline and noradrenaline) Here is a quote from an article in US News & World Report. "Multiple Sclerosis is associated with reduced levels of an important neurotransmitter, noradrenaline", said the study's first author, Paul Polak, a research specialist at the University of Chicago. The study was published online February 4, 2011 in Brain.

This just gets more interesting. We have shown that there is a huge B12 deficiency in hypothyroidism. What about the 2 thyroid hormones thyroxine and triiodothyronine? Where do they come from? Dopamine is derived from tyrosine. Both of the thyroid hormones are also derived from tyrosine.
 

Annesse

Senior Member
Messages
164
Hi Lee Ann, Here is a quote from the The Merck Manual on some of the symptoms of dysautonomia. "A dysfunction in the autonomic nervous system can cause dizziness or light-headedness due to excessive decrease in blood pressure when a person stands (orthostatic hypotension). The autonomic nervous system conrols blood pressure, heart and breathing rates, body temerature, digestion, metabolism..."

The study I posted on CFS and autonomic dysfunction states, "Our data show a clear and significant association between CFS and the symptoms of autonomic dysfunction."

That is why I said these diseases are really just clusters of symptoms. They all share the common features of autonomic dysfunction and B12 deficiency for instance. They also share the same missing hormones and neurotransmitters. That is why they are all so similar.

Hi Rich, Here is a little more info on the B12 connection to other autoimmune diseases as well. This is a quote from my book.

"In patients with diabetes, the B12 connection has been established by researchers at the prestigious Warwick Medical School, University of Warwick. The University of Warwick researchers, led by Professor Thornalley, have shown conclusively that diabetic patients are thiamine (B1)deficient in blood plasma. In a paper entitled, "High prevalence of low plasma thiamine concentration in diabetes linked to a marker of vascular disease," published i Diabetologia, the team found that thiamine concentration in blood plasma was decreased 76% in type 1 diabetic patients and 75% in type 2 diabetic patients.

The paper states, "The researchers found that the decreased plasma thiamine concentration in clinical diabetes was not due to a deficiency of dietary input of thiamine. Rather, it was due to a PROFOUND increased rate of removal of thiamine from the blood into the urine." (Thornalley, 2007). As we discussed earlier, if you are deficient in B12, you will not be able to absorb B1. It will be excreted in your urine."

One of the most surprising things I have learned is that the symptoms of a disease are what tell you where it originates, not an autoimmune label. For instance, recently one of the members of an Internet fibromyalgia support group posted a Fibromyalgia Differential List. There were 45 conditions and diseases on this list that share many of the same symptoms as Fibromyalgia. Some of the diseases listed were Hashimoto's, mitochondrial dysfunction, vitamin toxicity or deficiency, diabetes, and Chrohn's disease. I realized that many of the conditions on the list were associated with the same pathway shared by the autoimmune diseases we have been discussing. (including CFS) To test my theory, I chose one of the diseases on the list that, on the surface, looked as if it could not possibly be associated. The disease was dysbarism, which can be seen in scuba divers.

Here is what Webster's Dictionary says about dysbarism. "Nitrogen narcosis-Nitrogen comprises 79% of the air breathed by aerobic organisms,but at surface pressures it has no sedating effect. At greater depths, however, nitrogen affects the brain in precisely the same way as Nitrous oxide (also known as laughing gas)"

Here's what I discovered, "Nitrous oxide inactivates the cobalamin form of B12 by oxidation. Symptoms of B12 deficiency, including sensory neuropathy, myelopathy, and encephalopathy, can occur within days or weeks of exposure to nitrous oxide anesthesia in people with subclinical vitamin B deficiency. Symptoms are treated with high doses of vitamin B12, but recovery can be slow and incomplete. " (Wellness.com,2011)

B12 deficiency is just one component of these diseases. There are more, but they are all connected. It is a pathway, that every symptom, biological finding(such as the lack of dopamine and iron in fibromyalgia) and valid scientific finding in EVERY autoimmune disease can be traced directly back to.
 
Messages
84
Location
Tennessee
Hi Annesse

I was tested at Vanderbilt and had no signs of autonomic dysfunction. I will say when all this began, my very first set of labs showed I was boderline deficient in B12. Since learning about B12, anything under 500 is deficient. Mine was 250 and yet "they" continue to lower the range for B12. It is outrageous. I encourage all my friends and family to have their B12 checked because it is not in a included in a CBC. So, with all that said, could that have been the cause of my mysterious illness? Thanks for all the info.