Muscle fasciculations

[BearcatRx]

With all the talk of magnesium deficiency in microscopic colitis, I was curious as to how many of you began experiencing these issues after diagnosis? I've done fairly well in the last few weeks as far as my symptoms go. I supplement with 4000-6000IU of Vitamin D3 daily but for the moment I do not take any additional magnesium. I have, however, began to experience muscle fasciculations. It is isolated to one particular muscle, just below my elbow joint. I know these can be caused by low magnesium, among other health related issues but the chances I have ALS are pretty slim to none, so I'm assuming it is most likely magnesium related.

[Lilja]

Oh, ALS is such an awful disease so please don't even think of it...!

My MC journey started out with pains in the arch under my feet. My Dr was convinced that it was plantar fascitis. However, as soon as I was diagnosed with CC a couple of years later, got the D under control, and joined this forum and started taking magnesium, the pains disappeared.

The pains were awful, and I would compare it with the feeling of having too short muscles or too short tendons above the arch.

You could try magnesium, and start slowly.

Lilia

[Gabes-Apg]

it can also be linked to deficiency in B Group -
Alot of those types of symptoms resolved for me once i fixed both Magnesium deficiency and B Group (active B12, Active B6)
it was the combo of both for me

[Lilja]

I think you are right, Gabes. I started the B-vitamins first - at Tex' advice - and then magnesium.

Lilia

[Erica P-G]

Gabes,
How long did you notice it took for the combo to start kicking in?

I've been increasing the Mag every so cautiously since May 2015 and now I can alternate topical and internal and I'm up to 700-800 a day....it has taken 7 months to get to this point, and a month ago I started sublingual B-complex. Crossing my fingers I have reached a good point that I don't get a migraine this month......

I'm still giving it a year to really feel the effects of the healing that has been taking place. I can feel it, it is happening....this is the longest prescription I have ever been on

[BearcatRx]

it can also be linked to deficiency in B Group -
Alot of those types of symptoms resolved for me once i fixed both Magnesium deficiency and B Group (active B12, Active B6)
it was the combo of both for me

I've already had my B12 levels checked and they were within normal limits. I know serum Mg levels can be misleading because a normal level doesn't necessarily mean that intracellular Mg isn't low. I bought the magnesium spray a while back so I've started using it again. I may begin to supplement with magnesium glycinate.

[Gabes-Apg]

Erica,
not sure that I am a good benchmark for comparison...
Due to other health issues, I have had two lots of B12 deficiencies in past 18months despite using lingual supplementation. Have had to use active B12 via needles to overcome this issue.
My pyrrole issues cause major havoc on B6 levels. That coupled with methylation issues, It takes a lot to stay 'just above deficiency'

Bearcat, it's not just B12, it can be multiple or all the B's.

Also normal B12 in blood work is not always a true indicator.... There was a recent discussion about this...

[tex]

Also normal B12 in blood work is not always a true indicator.... There was a recent discussion about this...

Bearcat,

I'm not sure if this is due to methylation issues, or some other problem, but in line with what Gabes mentioned, some of us have similar symptoms unless we keep our B-12 (and possibly certain other B vitamins) at the upper end of the "normal" range. My B-12 level is always at the upper limit of the "normal" range, or above, but if I stop taking Metanx for a few weeks, my symptoms return — peripheral neuropathy, balance problems, muscle fasciculations, etc., sometimes individually, sometimes in combinations.

The "experts" tell us that the liver can store enough vitamin B-12 to last for up to 5 years. And yet I've done that trial (not taking Metanx or the equivalent of individual B vitamins in the active forms) numerous times, but the outcome is always the same — the symptoms always return.

If/when I have muscle fasciculations they are usually confined to a single muscle location, often in the face, but sometimes in an arm or leg muscle, or even on the torso. However, they never occur as long as I am taking Metanx. And no, I don't have diabetes.

The problem with so-called "normal" ranges is that they are developed for "normal" people. Few of us here are "normal". Such contradictions to accepted "science" always seem to baffle physicians, but unfortunately it is what it is.

Tex

[Blueberry]

For me the muscle twitches and cramps have come and gone over the years since developing MC. They typically show up in the legs. There has been times where I've noticed them on my face and stomach muscles. The stomach twitches were the worst as they could be quite hard and painful. I've noticed in my case that the muscle twitches seem to be diet related, and I'm hoping the current diet I'm on will get rid of them, and with that see the gut doing better over time. I've actually been trying to create the cramps and twitching in the legs of late, as kicking them around in a pool for an extended period of time is a good way for them to make an appearance. Of late so far so good, the muscle issues in the legs after splashing hard in water, have all but gone away.

[BearcatRx]

As I understand it, correcting these insufficiencies can take some time. Which of course creates undue stress (that can make things even worse) and the assumption that a more serious condition exists. Some of the first things you see when you look up muscle fasciculations is ALS, motor neuron disease, MS and Parkinson's Disease. I have been to a neurologist already who stated my minor tremors were nothing but a combination of action and physiologic tremors.

[tex]

Bearcat,

I had essential tremors, also. In fact, a little over 6 years ago I was diagnosed with Parkinson's disease by a neurologist who was supposed to be figuring out why I had a TIA. But he was wrong — I don't have Parkinson's. It turns out that essential tremors are one of many symptoms of not only vitamin B-12 deficiency, but also magnesium deficiency. At any rate, that diagnosis was when I started taking Metanx, and after about 6 or 8 months, most of my symptoms were much better. But I didn't resolve the last of them until late last spring, when I eliminated my long-standing magnesium deficiency.

I had a second TIA about 10 months after the first. None of the ER docs I saw could actually confirm that they were TIAs, but they couldn't rule it out, either. So I've been taking clopidogrel and BP meds ever since, even though my BP wasn't normally high. Looking back now, I'll bet a GF cookie that those TIAs were a result of magnesium deficiency.

I read somewhere that something like 68 % of Americans are magnesium deficient. The combination of a B-12/B-9/B-6 deficiency and a magnesium deficiency can play all sorts of tricks on the body, and both can do some really bad things to the CNS, especially the autonomic nervous system.

Tex

[BearcatRx]

Bearcat,

I had essential tremors, also. In fact, a little over 6 years ago I was diagnosed with Parkinson's disease by a neurologist who was supposed to be figuring out why I had a TIA. But he was wrong — I don't have Parkinson's. It turns out that essential tremors are one of many symptoms of not only vitamin B-12 deficiency, but also magnesium deficiency. At any rate, that diagnosis was when I started taking Metanx, and after about 6 or 8 months, most of my symptoms were much better. But I didn't resolve the last of them until late last spring, when I eliminated my long-standing magnesium deficiency.

I had a second TIA about 10 months after the first. None of the ER docs I saw could actually confirm that they were TIAs, but they couldn't rule it out, either. So I've been taking clopidogrel and BP meds ever since, even though my BP wasn't normally high. Looking back now, I'll bet a GF cookie that those TIAs were a result of magnesium deficiency.

I read somewhere that something like 68 % of Americans are magnesium deficient. The combination of a B-12/B-9/B-6 deficiency and a magnesium deficiency can play all sorts of tricks on the body, and both can do some really bad things to the CNS, especially the autonomic nervous system.

Tex

It's hard to believe that a neurologist would mistakenly diagnose you with Parkinson's disease! Part of me, as a health care professional, can't rule out anything. I don't want to be the typical male who believes nothing is wrong with him when in fact, there is. This is why I went to my GP first and then had the referral to a neurologist for my tremors. However with this new fasciculation and now my left middle finger has begun to have a mind of its own I have to be only a tiny bit nervous. While at rest it decides to pull slightly inwards towards my pointer finger. I also recently injured that wrist which could possibly cause some sort of nerve inflammation. Ah, the possibilities are endless! The chances of me having some sort of Parkinson's, ALS or what have you are very slim due to my age and no real family history of any of them. Then again I also do not fit the typical patient profile for having MC either. Having said that, magnesium and B vitamin deficiencies can cause these exact same symptoms and that is scary. Having a diagnosis of MC does greatly increase the chances that my symptoms are more likely caused by the deficiencies rather than some sort of motor neuron disease.

[Blueberry]

Oh, I can remember the early days dealing with MC. Everything that was different would cause concern, whether muscle pains, dizziness, confusion, etc and I would either read up on what could be wrong, I have piles of health books bought over the years, or sometimes see my doctor to discuss. Hopefully you will get back on your feet soon, and put this behind you, but if you end up like me and the MC hangs on for decades you'll likely become less concerned about these things.

Yeah, as I joke, when I tell others I'm having a good day, if he or she could trade places with me and feel as I do on that good day, they would go running to their doctor with fears that death was at hand! If not already, something else you will likely run across is when complaining of feeling poorly to those with normal bowels and good health, you will hear how your condition isn't that bad and then be given an odd example of how much worse he or she has experienced, such as stubbing ones toe really very hard, eating a bad lunch the year earlier that ruined the day, spent the day babysitting kids, etc.

[tex]

Blueberry's post is right on target. MC is not a run-of-the-mill ailment. It's a serious disease with serious consequences. All of the satellite issues associated with this disease can make us very vulnerable. Before I changed my diet, I met the diagnostic criteria for numerous diseases (such as arthritis, temporomandibular disorder, chronic fatigue syndrome, migraines, gastroparesis, etc.) but I never pursued any of those diagnoses, and of course the symptoms disappeared as my gut healed.

And to further confuse the issue concerning the perceived invincibility of the validity of diagnoses, when I had my second TIA (about 10 months after my Parkinson's diagnosis), I was examined by the head of the neurology department at a major teaching hospital. She agreed with me that I do not actually have Parkinson's disease. But she had never heard of gluten sensitivity causing neurological issues, so she would not admit that my symptoms might be due to residual gluten damage. And apparently she was either unaware that vitamin and mineral deficiencies can also cause those symptoms, or she trusted the blood test results to accurately assess them. So when I then asked her what might be causing my symptoms, she just shrugged, because she didn't have a clue.

The problem is that when a patient doesn't happen to fit the official diagnostic criteria for known diseases (IOW the difficult cases), most physicians don't know what to do with them. Doctors are flummoxed by the limitations of the system. In essence, the clinician has a choice of "diagnosing" such a patient with "IBS", or declaring that "It's all in the patient's head".

Sure, it's possible that you might be developing some AI disease (or even several AI diseases), but remember that many (probably most) of us here who have been living with this disease for a number of years have been where you are at various times during our recovery. MC can do weird things to our body and all of it's intricate operating systems when it is active. And most of these satellite issues are not even recognized by the medical community as being associated with the disease, let alone, understood.

But I can probably safely guarantee that if you try hard enough, you will be able to find a doctor who will diagnose you with one or more of these satellite syndromes, because at times, we meet the criteria. To illustrate how resolution of vitamin deficiencies can change the course of a disease, consider this quote from pages 31–33 of the book Vitamin D and Autoimmune Disease.

Multiple sclerosis is another debilitating disease with autoimmune origins.
One of the first neurological markers of multiple sclerosis (MS) to appear for many patients is known (in medical terms) as a "clinically isolated syndrome" (CIS). A common example of a CIS is optic neuritis (inflammation of the optic nerve, often resulting in pain, numbness, or tingling). When a CIS is detected, an MRI of the brain is usually ordered to rule out lesions. If they are detected, the presence of lesions indicates a very high risk of developing MS. Roughly half of all patients who have optic neuritis, eventually develop MS. Obviously, at this stage any effective preventative measures can be extremely valuable.

When lesions are present, associated with a CIS, the cause of inflammation is typically due to an attack by the immune system on the myelin sheaths that protect and insulate nerve fibers. This is known as a "demyelinating" event, and it is the reason why MS is classified as a demyelinating disease. In fact, MS is the most common demyelinating disease. Typically, when a second demyelinating event occurs, a diagnosis of MS is established.

With demyelinating diseases, if sufficient damage accrues over time to the myelin sheaths, the nerves that they originally protected, will die. When that happens, the damage cannot be reversed.

But research exists to demonstrate that the progression of CIS events to MS can be delayed and possibly postponed indefinitely in some cases. In a double-blind, randomized trial in which the subjects had all been diagnosed with optic neuritis, and who had a 25(OH)D blood level below 30 ng/ml (75 nmol/l), Derakhshandi et al. (2013) were able to show that vitamin D is very effective at reducing the risk level.8 The vitamin D group received 50,000 IU of vitamin D per week (which is equivalent to roughly 7,000 IU per day), while the other group received a placebo.

Of the group that received the vitamin D supplement, not a single person experienced a second demyelinating event. On the other hand, almost half of the group that received a placebo experienced a demyelinating event (5 out of 11), and therefore they progressed to a diagnosis of MS. The researchers concluded that the protection provided by the vitamin D supplement in this particular study led to a 68.4 % risk reduction, overall. Compared with most preventive medical treatments in general, that is a very high rate of success.

And here is reference number 8 from that quote:

8. Derakhshandi, H., Etemadifar, M., Feizi, A., Abtahi, S. H., Minagar, A., Abtahi, M. A., . . . Tabrizi, N. (2013). Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double blind, randomized, placebo-controlled pilot clinical trial. Acta Neurologica Belgica, 113(3), 257–263. doi:10.1007/s13760-012-0166-2

The bottom line is, we don't have to allow AI diseases to develop — they can be prevented if we do our homework and act in time.

Tex

[BearcatRx]

I certainly don't plan to allow any AI disease to progress on account of my refusal to be proactive in this matter. I've been supplementing Vitamin D for quite some time, I was taking 6000 IU daily and of course I'm not quite sure on whether or not that is an appropriate dose. I put myself back on entocort for a few months to get a better control of my MC symptoms which seem to be still coming around more often than not. Bases on Gabes response to supplementing B vitamins, I've decided to start taking a B complex supplement along with magnesium oil. Hopefully I start seeing some improvement over the next month or two.