Status
Not open for further replies.

jDv1978

New member
Joined
Sep 14, 2014
Messages
4
Reason
PALS
Diagnosis
07/2014
Country
AU
State
New South Wales
City
Sydney
I've been having a problem with my legs cramping at night for the past month or so. It initially started with maybe once per week but has gradually increased to mild cramping every night with currently at least one excruciating cramp attack per week that hurts for a day or so afterwards.

The latest attack on Monday night has left me in a lot of pain when walking even two days later. The cramping only affects my calf muscles at the moment.

I started taking Baclofen and Riluzole a couple of weeks ago and also take magnesium supplements once per day. Admittedly I probably don't drink as much water as I should do each day but don't think the lack of this would be the main cause of the cramping. I bought some extra strength muscular painkillers today but they don't seem to have much of an effect and also bought a tubular support bandage, the pressure from which seems to be helping.

My question is, do these symptoms seem typical of the stage when the legs begin to weaken & fail and I end up in a wheelchair or with crutches? I'm still working and find walking distances or up hills very hard on my legs, maybe I am over-straining them during the day. I have a desk job so it doesn't involve too much strain, but getting to and from work seems to be becoming more and more of a struggle.

I have emailed my neurologist to see if they can arrange some physiotherapy, has anyone found this to help?
 
Muscle cramps are very common in ALS, probably due to muscle fatigue or irritability from screwed up nerve impulses. They can be terribly painful and can occur in any muscle; feet, legs, arms, abdomen, chest, back, and (my all time favorite for sheer pain!) the neck and jaw. They can be in small muscles or affect big ones -- good old-fashioned charlie horses. As the muscles are affected by ALS, cramping is noted in that area. The cramping becomes less severe with time because the weakening muscles simply can't work up a good cramp anymore. They tend to be repetitive. Once a muscle starts cramping up, it does so over and over for a miserable hour or so. They tend to occur more if you have overdone exercise, if the muscle is cold, or if circulation is decreased. Holding a book up to read in bed on a cool night will just about guarantee some whopping good hand cramps and result in interesting finger gestures!
Although Baclofen is often listed under meds for cramping and prescribed for it, the indications say "Clinically, baclofen is used to treat spasticity." In my experience, Baclofen did not reduce cramping at all. However, if spasticity is triggering the cramping, Baclofen may reduce cramping by reducing the spasticity. (See my website at Muscle Cramping and Spasticity)
Quinine (Qualaquin, Quinine Sulfate) is a drug long used for muscle cramping but in 1995 the FDA made it available by prescription only because of its very rare but potentially severe risks (heart arrythmias, birth defects, blood disorders, hearing loss). Even so I would certainly recommend asking your doctor about trying quinine. Additionally, the FDA removed muscle cramping from its list of uses because leg cramps are not life threatening and therefore not worth the potential risk of quinine. So we are left to suffer or find a doctor willing to order Qualaquin outside of the FDA listed use, and pray that insurance will cover it. Or drink Tonic Water. The amount of quinine is probably too low to have any effect, however
I do not recall what dose I took, but do know that too large a dose will cause weakness. I am told the smallest tablet made is 260mg. I would recommend beginning with half a tablet and increasing to a whole one if it is ineffective. It is also available in 200 mg capsules. It is much less expensive than the other drugs prescribed, and, in my experience, the most effective.
Like any drug, quinine does have some potential side effects (and cannot be taken by pregnant women) but it does not cause physical and psychological dependence as Valium does in long term use. Aside from the weakness when I took the larger dose, I noticed no other immediate side effects. After more than 5 years of daily use, I did notice sweet foods started to loose any sweet taste, especially chocolate. Quinine is very bitter so I assumed it was the culprit since I wasn't on any other meds at the time. It was a minor problem and when I did stop taking quinine, I found the ability to fully enjoy an Oreo was gradually restored!
 
I got immediate relief from leg cramps a year ago with supplemental magnesium chloride, and they haven't come back. It's sold on ebay in crystalline form. It is dissolved in pure water, being careful no metal or plastic comes in contact with it. The dosage I used was 200% of recommended. Loose bowels tell you when you have enough.

Following is a long article, written by an Aussie, IIRC. I may have to break it up into several posts. Make of it what you will.
-----------

MAGNESIUM CHLORIDE

for Health & Rejuvenation

by Walter Last

Magnesium is nothing short of a miracle mineral in its healing effect on a wide range of diseases as well as in its ability to rejuvenate the aging body. We know that it is essential for many enzyme reactions, especially in regard to cellular energy production, for the health of the brain and nervous system and also for healthy teeth and bones. However, it may come as a surprise that in the form of magnesium chloride it is also an impressive infection fighter.

The first prominent researcher to investigate and promote the antibiotic effects of magnesium was a French surgeon, Prof. Pierre DelbetMD. In 1915 he was looking for a solution to cleanse wounds of soldiers, because he found that traditionally used antiseptics actually damaged tissues and encouraged infections instead of preventing them. In all his tests magnesium chloride solution was by far the best. Not only was it harmless for tissues, but it also greatly increased leucocyte activity and phagocytosis, the destruction of microbes.

Later Prof. Delbet also performed experiments with the internal applications of magnesium chloride and found it to be a powerful immune-stimulant. In his experiments phagocytosis increased by up to 333%. This means after magnesium chloride intake the same number of white blood cells destroyed up to three times more microbes than beforehand.

Gradually Prof. Delbet found magnesium chloride to be beneficial in a wide range of diseases. These included diseases of the digestive tract such as colitis and gall bladder problems, Parkinson's disease, tremors and muscle cramps; acne, eczema, psoriasis, warts and itching skin; impotence, prostatic hypertrophy, cerebral and circulatory problems; asthma, hay fever, urticaria and anaphylactic reactions. Hair and nails became stronger and healthier and patients had more energy.

Prof. Delbet also found a very good preventative effect on cancer and cured precancerous conditions such as leukoplasia, hyperkeratosis and chronic mastitis. Epidemiological studies confirmed that regions with magnesium-rich soil had less cancer than those with low magnesium levels.

Another French doctor, A. Neveu, cured several diphtheria patients with magnesium chloride within two days. He also published 15 cases of poliomyelitis that were cured within days if treatment was started immediately, or within months if paralysis had already progressed. Neveualso found magnesium chloride effective with asthma, bronchitis, pneumonia and emphysema; pharyngitis, tonsillitis, hoarseness, common cold, influenza, whooping cough, measles, rubella, mumps, scarlet fever; poisoning, gastro-enteritis, boils, abscesses, whitlow, infected wounds and osteomyelitis.

In more recent years Dr Vergini and others have confirmed these earlier results and have added more diseases to the list of successful uses: acute asthma attacks, shock, tetanus, herpes zoster, acute and chronic conjunctivitis, optic neuritis, rheumatic diseases, many allergic diseases, Chronic Fatigue Syndrome and beneficial effects in cancer therapy. In all of these cases magnesium chloride had been used and gave much better results than other magnesium compounds.

Magnesium for Nerves

Magnesium has a calming effect on the nervous system. With this, it is frequently used to promote good sleep. But more importantly, it can be used to calm irritated and over-excited nerves. This is especially useful with epileptic seizures, convulsions in pregnant women and the 'shakes' in alcoholism. Magnesium levels are generally low in alcoholics, contributing or causing many of their health problems. If magnesium levels are low, the nerves lose control over muscle activity, respiration and mental processes. Nervous fatigue, tics and twitches, tremors, irritability, hypersensitivity, muscle spasms, restlessness, anxiety, confusion, disorientation and irregular heartbeat all respond to increased magnesium levels. A common phenomenon of magnesium deficiency is a sharp muscle reaction to an unexpected loud noise. 'Memory pills' have been marketed that consist mainly of magnesium.

Many of the symptoms of Parkinson's disease can be overcome with high magnesium supplementation, shaking can be prevented and rigidity eased. With preeclampsia pregnant women may develop convulsions, nausea, dizziness and headaches. In hospitals this is treated with magnesium infusions. Because of its strong relaxing effect, magnesium helps not only to have a better sleep but is also useful in overcoming headaches and migraines. Even the number of suicides are linked to magnesium deficiency. The lower the magnesium content in soil and water in a given region, the higher are the rates of suicides.

Epilepsy is marked by abnormally low magnesium levels in the blood, spinal fluid and brain, causing hyperexcitability in regions of the brain. There are many reported causes of epilepsy greatly improving or disappearing with magnesium supplementation. In a trial with 30 epileptics 450 mg of magnesium supplied daily successfully controlled seizures. Another study found that the lower the magnesium blood levels the more severe was the epilepsy. In most cases magnesium works best in combination with vitamin B6 and zinc. In sufficient concentrations, magnesium inhibits convulsions by limiting or slowing the spread of the electric discharge from an isolated group of brain cells to the rest of the brain. Animal studies show that even the initial burst of firing nerve cells that starts an epileptic attack can be suppressed with magnesium.
------------ I'm leaving out parts on heart disease, cancer and aging.

The Rejuvenation Mineral

In addition to its anti-microbial and immune-stimulating properties, both magnesium as well as chloride have other important functions in keeping us young and healthy. Chloride, of course, is required to produce a large quantity of gastric acid each day and is also needed to stimulate starch-digesting enzymes. Magnesium is the mineral of rejuvenation and prevents the calcification of our organs and tissues that is characteristic of the old-age related degeneration of our body.

Using other magnesium salts is less advantageous because these have to be converted into chlorides in the body anyway. We may use magnesium as oxide or carbonate but then we need to produce additional hydrochloric acid to absorb them. Many aging individuals, especially with chronic diseases who desperately need more magnesium cannot produce sufficient hydrochloric acid and then cannot absorb the oxide or carbonate. Epsom salt is magnesium sulphate. It is soluble but not well absorbed and acts mainly as a laxative. Chelated magnesium is well absorbed but much more expensive and lacks the beneficial contribution of the chloride ions. Orotates are good but very expensive for the amount of magnesium that they provide and both orotates and chelates seem to lack the infection-fighting potential of the magnesium chloride.

Calcium and magnesium are opposites in their effects on our body structure. As a general rule, the softer our body structure the more we need calcium, while the more rigid and inflexible it is, the less calcium and the more magnesium we need. Magnesium can reverse the age-related degenerative calcification of our body structure and with this help us to rejuvenate.

Young women, children and most of all babies have soft body structures and smooth skin with low calcium and high magnesium levels in their cells and soft tissues. They generally need high calcium intakes. This is the biochemistry of youth. As we age and most pronounced in old men and post-menopausal women, we become more and more inflexible. The arteries harden to cause arteriosclerosis, the skeletal system calcifies to cause rigidity with fusion of the spine and joints, kidneys and other organs and glands increasingly calcify and harden with stone formation, calcification in the eyes causes cataracts and even the skin hardens, becoming tough and wrinkled. In this way calcium is in the same league as oxygen and free radicals, while magnesium works together with hydrogen and the antioxidants to keep our body structure soft.

A gynaecologist reported that one of the first organs to calcify are the ovaries, leading to pre-menstrual tension. When he put his patients on a high magnesium intake their PMT vanished and they felt and looked much younger. Most of these women said that they lost weight, increased their energy, felt less depressed and enjoyed sex again much more than before. For men it is equally beneficial for problems arising from an enlarged prostate gland. Symptoms commonly improve after a period of supplementation with magnesium chloride.

Increased magnesium intake has also been shown to be an effective way to prevent or dissolve kidney stones and gall bladder stones, the latter best in combination with a high lecithin intake. Activation of digestive enzymes and bile production as well as helping to restore a healthy intestinal flora may be the factors that make magnesium chloride so beneficial in normalising our digestive processes, reducing any digestive discomfort, bloating and offensive stool odours. This is in line with a reduction of all offensive body odours, including underarm and foot odour.

Prof. Delbet used to give magnesium chloride solution routinely to his patients with infections and for several days before any planned surgery and was surprised by many of these patients experiencing euphoria and bursts of energy. Magnesium chloride supposedly has a specific action on the tetanus virus and its effects on the body. It even seems to be protective against snakebites. Guinea pigs did not die after normally lethal injections of snake venom and a rabbit survived a poisonous snakebite when given magnesium chloride solution.

In addition to being the most essential mineral in our cellular energy production, magnesium is also needed for the ingested B-vitamins to become metabolically active. Magnesium is also essential for the synthesis of nucleic acids, for cell division to occur, for DNA and RNA synthesis of our genetic material, for protein as well as fatty acid synthesis. Unfortunately magnesium deficiency at a cellular level where it counts is not easy to diagnose, as serum magnesium levels do not correlate to muscle or cellular magnesium levels. Instead of trying difficult tissue magnesium analysis to find out if your health problems may be due to low magnesium levels, it is much easier and more effective just to take more magnesium and see what happens.

Researchers at the Lille Pasteur Institute found in a prospective study with over 4,000 men over an 18-year follow up period that high levels of magnesium were associated with a 50 percent decrease in cancer mortality, and a 40 percent decrease in cardiovascular and all-cause mortality ("Zinc, Copper and Magnesium and Risks for All-Cause Cancer, and Cardiovascular Mortality" Epidemiology, Vol. 17, No. 3, May 2006, epidem.com).

Rejuvenation by ingesting more magnesium is a slow process, especially as the amount of magnesium that we can take is limited by its laxative effect and the need to keep it in a reasonable balance with the calcium and phosphorus intake. The other problem is that spastic muscles have a poor blood and lymph circulation, which makes it difficult for the ingested magnesium to dissolve and flush out the tissue and joint calcifications. Therefore, we can greatly speed up the rejuvenation process by increasing the circulation through permanently contracted muscles as with deep tissue massage, hot and cold water applications, relaxation exercises, lymphasising as well as packs and rubs with magnesium chloride or Epsom salts.

How much?

Hydrated magnesium chloride contains about 120 mg of magnesium per gram or 600 mg per rounded teaspoon. It has a somewhat bitter-salty taste and a mildly laxative effect. To improve or maintain your health you may use up to 600 mg of magnesium daily in divided doses with meals, well diluted in a drink or mixed with food.

With raised blood pressure, calcifications and other symptoms of magnesium deficiency you may use 600 mg orally in addition to any transdermal application of magnesium oil for arthritis or muscle relaxation. With low blood pressure you may use about 300 mg of magnesium daily in addition to some extra calcium. As a source of calcium you may dissolve some self-made eggshell powder in citrus juice or vinegar. Actual amounts are not important as the body absorbs only as much as it needs.

For daily use it will be more convenient to dissolve the magnesium chloride in water. You may dissolve 10 lightly rounded teaspoons of the crystals in a medium size glass of water or, more accurately, 50g in 150 ml of water. Decant and discard any undissolved residue. One teaspoon of this solution three times daily with food or drink provides a daily intake of about 600 mg of magnesium. Alternatively you may fill a jar half full with magnesium chloride flakes and then to the top with water. This provides similar amounts of magnesium.

Individuals with very sensitive taste buds may start using it in tiny amounts mixed with strongly flavoured food and increase doses very gradually. You may start adding one drop to a glass of water or mixed with a meal. If that is alright, then next time add two drops, and then three until it starts tasting unpleasant. Cut back temporarily, but after another week or two you may not taste it anymore and you can start adding further drops until you reach the desired intake. I had many people complaining that they cannot use it because they had started taking it in too high a dose or too concentrated.

While for some conditions it can be helpful to take a larger amount and wash it down with a drink, you need to be careful as this can easily upset the stomach. For everyday use I recommend adding it in small amounts to food and drink so that it is present in amounts that would be normally present in water and food with a high mineral content. It definitely should not taste unpleasant, and in most cases the actual amount used every day is not that important.

This same solution may also be used as a pack over tumours and infected, inflamed, painful, stiff or calcified joints, muscles, adhesions or scar tissue. It is also excellent to use a weak solution as a back rub and all over the body to relax tense muscles anywhere and even to rejuvenate ageing skin. For sensitive skin use it in a strongly diluted form. On wounds it was commonly used in a 4% solution that is 4 g or a level teaspoon in 100 ml or a small glass of water.

With acute infections dissolve 40 g or 8 slightly rounded teaspoons in 1 liter of water. With children commonly a small glassful or 125 ml has been used every 6 hours. Adults may double this dose by drinking this amount every 3 hours or even more until diarrhoea develops and then cut back to a maintenance intake just below the level of diarrhoea until the infection has cleared. If you have sensitive taste buds the taste may be rather unpleasant in this concentrated form. Therefore try to drink it in one gulp while pinching your nose and quickly drink something pleasant afterwards.

For general relaxation as well as for back pain and arthritic or muscle pain and stiffness either magnesium chloride or Epsom salts may be used. Both are excellent to soak in a hot bath with the addition of up to 1 kg of magnesium salts. Also hot magnesium salt packs may be used over stiff or painful muscles and joints. Keep warm for one to two hours with a hot water bottle.

There is also a non-hydrated or desiccated magnesium chloride available; it contains approximately twice as much magnesium as the hydrated product. If using this then just half the amounts indicated above. It is now also available in tablet form but more expensive.

Instead of magnesium chloride, you may use the brine from the production of sea salt. It has the advantage of having more trace minerals than the technical magnesium chloride, but due to its high content of magnesium sulphate it is also rather bitter. While magnesium chloride does have a laxative effect, magnesium sulphate or Epsom salts is much better suitable if used purely as a laxative because it is less well absorbed and therefore attracts more water into the intestines.

While a higher magnesium intake is beneficial for most individuals, those with low blood pressure usually require more calcium in addition. Normal blood pressure is about 120/80; the lower it is the higher should be the daily intake of calcium. While those with high blood pressure may benefit from ingesting up to twice as much magnesium as calcium, those with low blood pressure may take twice as much calcium as magnesium, but both minerals in relatively high amounts. Those with low blood pressure and a tendency towards inflammations may also reduce their intake of phosphorus. A high level of phosphorus in the blood tends to cause magnesium and calcium levels to be low.

Normally a good diet should provide all necessary vitamins and minerals. Presently supplementation is often indicated because of malabsorption, poor dietary choices, metabolic defects, and specific diseases. Also some drugs, such as diuretic and antibiotics may cause magnesium deficiency. When supplementing with magnesium or other vitamins and minerals, the balance with related nutrients, such as calcium and phosphorus, and also the fluid intake, are usually more important than the absolute intake of magnesium or any other single nutrient. If in doubt consult a qualified health professional.

For supplies of magnesium chloride in Australia see Resources. For adding large amounts to bath water you may try to obtain hydrated magnesium chloride in 25 kg bulk quantities from companies that supply agricultural and water chemicals. Commonly it originates from evaporated seawater and especially from the Dead Sea.

Magnesium Oil is a concentrated and nearly saturated solution of magnesium chloride in water. It is called “oil” because of the smooth oily feeling when rubbed onto the skin. Magnesium is relatively easily absorbed through the skin, and in this way is an effective way to relax tense muscles and improve arthritic joint problems. It is especially good for low back pain. In addition to skin rubs you may also use hot packs with cloths soaked in magnesium oil.

CAUTION: Magnesium supplementation should be avoided with severe kidney problems (severe renal insufficiency when on dialysis), and also with myasthenia gravis. Be careful with severe adrenal weakness or with low blood pressure. Too much magnesium can cause muscle weakness, if this happens temporarily use more calcium. Signs of excess magnesium(hypermagnesia) can be similar to magnesium deficiency and include changes in mental status, nausea, diarrhoea, appetite loss, muscle weakness, difficulty breathing, extremely low blood pressure, and irregular heartbeat.
-------------

There's more, but you get the idea.

GB
 
My only advice is to drink more water. That causes cramps in healthy people.

And yes, my PALS had very painful cramps that we massaged.
 
One of my first symptoms prior to diagnosis was severe leg cramps, primarily in my calves and the muscles in the back of my legs above my knees. I described the cramps as a "fist growing out of the back of my legs". I could guarantee a cramp by the normal 'just woke up' stretching of my legs in the morning, where you point/stretch your feet out.

I tried magnesium and calcium to no avail. Tonic water did nothing.

The only thing that helped was to put one of those 4-6" foam exercise rollers at the foot of my bed so that I could rest my feet against it and prevent or recover from the 'pointing'.
 
I have had cramping everywhere, legs, feet, arms, neck tongue. Doctor said tonic water, it helps somewhat, I take baclofen, appears that when I over do it is when I cramp, my neck and tongue is different, I can turn my head a certain way and my neck goes into a cramp, good to know that this is normal.

Janie
 
Normal is not necessarily necessary. When my neck starts to cramp, I rub hemp oil on it, Hemjoba dot com, and my neck loosens up in a few minutes.

If you don't trust magnesium chloride, there are little bottles of "Leg Cramps" pills at our local grocery. They really worked on my early morning Charlie horses in my calves.
 
gray i wish i live where your at, if i did i would try it
 
Check the site. They claim it is legal everywhere.
 
I second what Greg said. My husband present with cramping...legs, hands,feet. Tried diet changes, magnesium, tonic water, calcium....nothing helped.
 
Ditto on drinking a lot of water. My body requires at least 4 bottles (16.9 oz. each) of water each day or debilitating cramps rule, specially the calf muscles. Downside, of course, is that one has to visit the rest room much more frequently. At this point in my life, I elect the water route.
 
Status
Not open for further replies.
Back
Top