"well defined 6mm lesion" with muscle problems, could be MS?

[gtg287y]

Question: A February 2014 MRI of my brain (done to diagnose conscious collapsing spells I have) showed a “well defined 6mm lesion just to the right at the base of the nodulus in the posterior fossa”. I was told it was probably nothing and to have it rescanned in latter to make sure no new lesions have shown up. Since then I have developed severe muscle problems that have left me using a wheelchair or a walker frequently. Could that lesion be a sign of Multiple Sclerosis? Or explain my below health problems in any way? I had dismissed MS after a doctor told me it didn't explain my collapsing spells, but have recently heard of "Paroxysmal symptoms" which sound like they might be similar.

Background:
For over 8 years I have had these attacks of conscious collapsing, that appear to be a "faint" to witnesses. I can correctly remember words said, how my body hit the ground, and various other things. I assumed it was just fainting and ignored it for far longer than I should have.

As the years went by, I started to gradually (as far as I can remember) get other symptoms associated before and after my collapses, such as breathlessness, slurring of my words, confusion, sleepiness, a feeling of heat, a sense of dizziness or being off balance and muscle weakness. I began to learn that if I felt any of these symptoms I should stop exerting immediately (not even crawling) or I would collapse. The sensations would last anywhere from minutes to hours, very rarely spanning more than one day.

I was tested for heart conditions and epilepsy with Holter and Ambulatory EEG testing and both were negative. I had an MRI of my brain done, and it found the lesion described above.

This year, I began to collapse and have related symptoms VERY frequently (20 times in a few months when I normally collaspe around seven times per year). I felt new symptoms around this time, muscle pain, tingling and numbness. I had a lot of cramps in my calves. Then, in early May, I became so weak I couldn't walk. This lasted until August, fluctuating between being completely unable to stand to being able to walk for ten minutes or so before the weakness began to come back. I was using a walker or a wheelchair basically full time for four months. When I could walk, I would sometimes feel "gnarled up" (back arched, knees stiff, head resting on my shoulder), other times I would just feel 'limp' (back hunched over, grabbing my thighs to support my torso). Even now I feel good "most days" but pushing myself too hard puts me right back at my worst for a few days and I'm back to using a walker or wheelchair.

My new symptoms prompted new tests. I am negative for Acetylcholine receptor binding antibody, so Myasthenia Gravis seems unlikely (though there are other blood tests for it). The six most common genes for Periodic Paralysis (Hyper or Hypo) were negative as well, so that seems unlikely as well (though there are something like 24 other genes that weren't tested). My creatine kinase levels are low, not high, so that rules out a variety of types of myopathy. I have positive ANA titers, but I understand that to be more common in healthy people than sick ones.

My GP is stumped by my health and the neurogeneticist that thought it might be Periodic Paralysis has closed his practice. Any help I can get coming up with what sorts of specialists I should see would be much appreciated.

[jimmylegs]

hi and welcome have any of your docs ever referred you to a dietitian for analysis of a diet diary, or even blood testing? i ask dt the common nutritional underpinnings of a diverse array of seemingly unrelated chronic health conditions. could be an idea to scientifically rule nutrition issues out at a minimum..

[gtg287y]

Thank you for the welcome!

I haven't seen a dietician at all, but I know from blood tests that before this all started this year my vitamin D and B12 levels were pretty low and was put on supplements. One of the things that I've been told it might be is Periodic Paralysis, which involves an intense sensitivity to potassium intake (In the Hyper form you have to avoid potassium and eat frequent small high-carb meals, and in the Hypo form you have to eat (or more often, take supplements since you physically can't get enough) potassium and avoid carbohydrates). So I can believe that nutrition can be a complicated and confusing source of health issues.

I'm still at the point where I'd like to cross the things off that seem both likely AND needing specific treatment before I try to just find out if there's something in my environment (like diet) that I could experiment with. For example, by trial and error someone with Periodic Paralysis can change their diet to avoid having symptoms, BUT they still have the life threatening sensitivity to anaesthetics that comes with that disease (that requires doctors to be informed of before hand to prevent).

[lyndacarol]

I know from blood tests that before this all started this year my vitamin D and B12 levels were pretty low and was put on supplements.

Welcome to ThisIsMS, gtg287y.

I always ask for my own copy of any test results; if you have yours for B12 and are willing to share personal information, I am curious to know which tests were done (serum B12, homocysteine, or methylmalonic acid test), what your test results were – and what supplements exactly you have been put on.

Recently, my focus is on possible vitamin B12 deficiency. The authors of the book, Could It Be B12? An Epidemic of Misdiagnoses believe that US labs have outdated standard ranges (that they are set too low); they believe the cutoff for insufficiencies/deficiency for the serum B12 test should be 550 pg/mL.

[gtg287y]

I always ask for my own copy of any test results; if you have yours for B12 and are willing to share personal information, I am curious to know which tests were done (serum B12, homocysteine, or methylmalonic acid test), what your test results were – and what supplements exactly you have been put on.

My results say:

Serum Panel B12 266 pg/mL


They say that a normal range is 200-1100 pg/mL, but then go on to say:

"Please Note: Although the reference range for the vitamin B12 is 200-1100 pg/ML, it has been reported that between 5 and 10% of patients with values between 200 and 400 pg/mL may experience neuropsychiatric and hematologic abnormalities due to occult B12 deficiency: less than 1% of patients with values above 400 pg/ML will have symptoms."

When I asked my doctor about it (the test was performed at the beginning of my extreme muscle weakness) she said that she didn't think it could be the cause of my problems. HOWEVER, it's good to reminded that result(after all, at this point I am either in a rare group of people with occult vitamin B12 deficiency, or some other equally rare (or rarer) group of people). I think one reason my doctor said it probably wasn't my B12's fault was that my symptoms fluctuate a lot and (besides the past few months) are episodic. It SOUNDS Like Vitamin B12 deficiency is more constant (because it causes nerve damage). Can you confirm or deny this?

As far as supplements go, I was just told to get anything over the counter and aim for 2000 mcg a day. I picked Nature's Bounty and stuck with the supplements for a few months before giving up (If I recall right, they never told me how long to continue on them).

[jimmylegs]

hi again try for 500 pg/mL serum b12.. low b12 levels can correspond to low zinc levels... and insensitivity to potassium can be a magnesium deficit problem. also, low d3 can be a sign of low magnesium. supplemental vit d3 should always be balanced with magnesium to prevent depletion and ensure its availability for other processes like potassium utlization etc etc.
you are right, it is a fascinatingly interconnected job dealing with nutritional sources of health problems. as a rule of thumb if you make sure your serum essential nutrient levels are in the top quarter of the normal range, you will probably be set
a good step one is to track your diet and compare your nutrient intake to established RDAs. if you google any nutrient along with the term whfoods you will find a useful pages to help.
example: http://www.whfoods.com/genpage.php?tnam ... #foodchart

[lyndacarol]

My results say:

Serum Panel B12 266 pg/mL


They say that a normal range is 200-1100 pg/mL, but then go on to say:

"Please Note: Although the reference range for the vitamin B12 is 200-1100 pg/ML, it has been reported that between 5 and 10% of patients with values between 200 and 400 pg/mL may experience neuropsychiatric and hem. I atologic abnormalities due to occult B12 deficiency: less than 1% of patients with values above 400 pg/ML will have symptoms."

When I asked my doctor about it (the test was performed at the beginning of my extreme muscle weakness) she said that she didn't think it could be the cause of my problems. HOWEVER, it's good to reminded that result(after all, at this point I am either in a rare group of people with occult vitamin B12 deficiency, or some other equally rare (or rarer) group of people). I think one reason my doctor said it probably wasn't my B12's fault was that my symptoms fluctuate a lot and (besides the past few months) are episodic. It SOUNDS Like Vitamin B12 deficiency is more constant (because it causes nerve damage). Can you confirm or deny this?

As far as supplements go, I was just told to get anything over the counter and aim for 2000 mcg a day. I picked Nature's Bounty and stuck with the supplements for a few months before giving up (If I recall right, they never told me how long to continue on them).

From the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.):
http://b12awareness.org/could-it-be-b12 ... diagnoses/

On page 11:

"There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury."

These authors suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms.

There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage. Are symptoms of a B12 deficiency more constant?… Symptoms come and go at first. The authors and many experts believe they become irreversible in time – I hope they can eventually return to normal.


As for supplements… All the information I have read recommends methylcobalamin (a.k.a. methyl B12), rather than cyanocobalamin. Cyanocobalamin must be decyanated and "must be converted into the active coenzymes (methylcobalamin and adenosylcobalamin) that are the only forms the body can use." (Page 164, Could It Be B12?) The authors think that injections act more quickly than oral supplements, although there seems to be dispute among "experts" and many say that oral, sublingual supplementation (with methyl B12) is just as effective. (In the US injections given in doctors' offices are the cyano form; methyl is available from a compounding pharmacy.)

By the way, taking vitamin B supplements before testing will skew the lab results.

[gtg287y]

Thank you so much for the information!

Are symptoms of a B12 deficiency more constant?… Symptoms come and go at first. The authors and many experts believe they become irreversible in time – I hope they can eventually return to normal.

Huh, I wonder how the symptoms come and go, and what the threshold for 'irreversible' is?

By the way, taking vitamin B supplements before testing will skew the lab results.

Also good to know. If I do try to pursue a B12 hypothesis, I will want to make sure I haven't taken supplements in awhile.

How WOULD I pursue a B12 hypothesis? What sorts of doctors would be familiar with it? If the OTC supplements I'm taking aren't the right type, how do I get the right type (sublingual meaning you put it under your tongue and it dissolves?)

[jimmylegs]

http://www.thisisms.com/forum/undiagnos ... ml#p228912

[lyndacarol]

Thank you so much for the information!

Are symptoms of a B12 deficiency more constant?… Symptoms come and go at first. The authors and many experts believe they become irreversible in time – I hope they can eventually return to normal.

Huh, I wonder how the symptoms come and go, and what the threshold for 'irreversible' is?

By the way, taking vitamin B supplements before testing will skew the lab results.

Also good to know. If I do try to pursue a B12 hypothesis, I will want to make sure I haven't taken supplements in awhile.

How WOULD I pursue a B12 hypothesis? What sorts of doctors would be familiar with it? If the OTC supplements I'm taking aren't the right type, how do I get the right type (sublingual meaning you put it under your tongue and it dissolves?)

I have no explanation for the pattern of symptoms; as for the threshold of irreversible, some say six months, others say one year – from what I have read there is no consensus on the time. I'm hoping they are ALL reversible (but I have no medical background).

In my opinion, since you are taking vitamin B supplements, test results would be invalid. It is possible that the HoloTc test (which tests for the transport protein, transcobalamin, which binds to B12 and transports it from the bloodstream to the cells) would be useful.

Initial testing is used to discover a deficiency in the blood (in other words, if B12 is properly digested from food and makes it into the bloodstream). The second kind of possible B12 deficiency is in the cells (if the vitamin does not make it from the blood to the tissues).

OR if your doctor is willing, he could prescribe a trial of B12 injections – B12 is water-soluble, non-toxic, has no side effects, and is inexpensive. If your body does not use the B12 or need to store the excess in your liver, it is flushed out in urine. If symptoms improve with a therapeutic trial, one could assume there was a deficiency.

A GP, internist, any doctor at all can order these tests or injections (of methyl B12 is best); if you or your doctor feel more comfortable with a specialist, a hematologist is probably the person to see.

Yes, "sublingual" means you dissolve it under your tongue. Again, look for the methylcobalamin form. I find these supplements in the local health food store; they are available in 1000 µg or 5000 µg doses.

[jimmylegs]

undiagnosed-f54/topic25334.html#p228912