Magnesium and Myasthenia Gravis

[Charles Karcher]

Part of the cleansing process prior to a colonoscopy includes a magnesium solution.  After first giving the go ahead my neurologist changed his mind and recommended against using the magnesium solution.  My gastroenterologist had no problem deleting it from the prep so I question the need for it in the first place,  The procedure went through without the magnesium solution and without issues.

[Susann]

Avoid magnesium. As a doctor I can tell you there is only a paragraph in textbooks about MG. Most non- neurologists don’t know all the meds that can worsen MG. You can print off a list and carry it around with you. When I am hospitalized and my magnesium gets low I speak to the doctor to find out my magnesium level. My neurologist says it is best to keep the level on the low side of normal

[Prosper Abusah]

I have MG for more than 25 years . I have severe muscle spasms of my hands and fingers and muscle cramps . I have been taking small doses of magnesium for years without much improvement in the spasms . Since last year I have been taking mega doses of magnesium and the muscle spasms have stopped . I have not noticed any deterioration in my MG symptoms . The list of medications and things mentioned to avoid when you have MG is endless .

[Willem]

Hi Jodi, When I first consulted my neurologist in 2020, she told me that magnesium works against the action of AChR at the neuro-muscular junction, and that I must spot taking magnesium supplements

[Michael Chiesa]

My neurologist suggested taking it but I stopped after a year. Saw the warnings and didn’t notice any difference one way or the other. Need to go by what you are feeling, no one size fits all as we know. I was given Cipro and it is a Black Box Warming. Both Neurologist and Primary said don’t worry. Developed breathing issues so I tend to err on the side of caution with all drugs. Need to be your own advocate.

 

[Mary]

I take a magnesium supplement every night and have not had a problem.  Most of the drugs on the list of drugs that may cause problems, do cause problems for me, but not all of them.

[Maureen Gosz]

What do you look up to find out what drugs or supplements are bad for MG?

[Marlene Laird]

Maureen, you can go to https://myasthenia.org/  to find what drugs and supplements are bad for MG.  Print out the list and keep it in your purse or wallet.  When you go to any doctor or ER show them the list and the website where you got it from.  Also, any time any doctor writes a new prescription for you, remind them you have MG and ask them to check it against the list.  We have to be our own advocate.  If you are unable to for any reason, take someone with you who can do it for you.  They should be able to know about the list, as well as any other information about your MG.  Each of us are a different and are affected by different things.

[Marguerite Thibeau]

Magnesium is very necessary for healthy muscles, and easy to get through our diet without problems. Certain populations are low in magnesium as the soil in the area is low and not enough was available in food. Scotland had this problem.

“Magnesium is in charge of numerous important functions in our body. In the power plants of our cells, the mitochondria, it is involved in generating the indispensable energy needed for all of the body’s processes. Magnesium activates about 600 enzymes in our body. It makes sure that hormones like insulin are stored and released. It is involved in the production of nerve messengers like serotonin, and protects our cardiac muscle from stress. In the skeleton, it is an essential factor in bone health. Finally, in our muscles, magnesium is responsible for their usual function together with calcium.”

“A well-adjusted magnesium and calcium balance is indispensable for healthy muscle function. Whereas calcium is responsible for muscle tension, magnesium is in charge of muscle relaxation. It controls the transmission of impulses from nerves to muscles, ensures that the continued inflow of calcium is prevented and that the nerve excitability is lowered once again – which leads to the desired relaxation. For healthy adults, the German Nutrition Society recommends a daily magnesium intake of 300-400 mg depending on age and gender. If there is magnesium deficiency, there is excessive calcium in the muscle and it can no longer fully relax. This causes painful cramps.”

High dose IV Magnesium is a problem for MG patients, and most be assessed by need by doctors aware of the issue for MG patients.  But most of us can look up foods rich in it, or use an appropriate supplement overseen by our doctors.

 

[MikeS]

Today I’m in the middle of my first 5-day IVIG infusion series and I hadn’t really eaten much of anything for about 2 weeks because of my swallowing difficulties. Upon admission they did bloodwork and my Magnesium was 1.6 so the admitting doc ordered Magnesium, of course. I am so fortunate that a couple of months ago I just happened to have read a comment by someone on this website that mentioned about not taking Mg for anything (like, for example, leg cramps). I looked around here and at other MG forum sites, did some more formal research and figured there was something about this so I did something I’ve never done in my life and refused the order. While an inpatient I dug around some more and, voila, Mg inhibits ACh production! I had to educate my nurses and the ordering MD and they soon realized what might have otherwise happened (exacerbate my flare-up or cause an MG crisis). My advice is to learn as much as you can about MG and known triggers because about 99% of the medical community know very little about MG, and there may be times that you’ll have to stand up and be strong and insistent and have some reference(s) handy to back up your decision. This website might have saved my life.

[Annie DeOcampo -Lechtenberg]

Perfectly said. I would have been just repeating your statements. I also take magnesium for the same reasons. I rarely have muscle cramps and it seems to have helped my digestive system with the mestinon. I would avoid iv magnesium but every healthy body needs the minerals to survive. My mg is pretty well maintained and I am very active.

[MikeS]

I just wanted to be clear about my previous comment… I’m referring to not taking Mg ONLY during a flare-up. not while in remission.

[Angel]

Good morning.

Have you aware  or hear about this? Please your comments are appreciated

FDA Approves subcutaneous Vyvgart for MG

https://www.formularywatch.com/view/fda-approves-subcutaneous-vyvgart-for-myasthenia-gravis

Thank you

[stuart cohen]

Under no circumstance take magnesium supplementation with MG. Initially took a cocktail of calcium, magnesium, and D3 to aid in the reduction of cramping. Cramping increased, felt more tired. My doctor, a specialist in MG in the Department of Neurology, UC Davis, told me the magnesium exacerbated the symptoms of MG and to stop immediately. I did, and felt much better, with greatly reduced cramping…

[paul spychalski]

Thanks Jodi, I’ll remember that!

[Paul Dube]

I contracted MG five years ago.  I was taking a high dose of magnesium at that time.  While swimming freestyle, I noticed that my legs would get very week and several months later, I began seeing double out of my left eye.  My MG was diagnosed by a neuro-ophthalmologist.  My MG is controlled by mestinon, 3x’s a day at 60 mg.

On another note, I completed my fourth infusion several weeks ago with Vyvgart.  Completing this regimen, I have better control of eating and, most importantly swallowing.

[paul spychalski]

Thanks.

[paul spychalski]

How much Mag. is too much??

TIA

[Mark Cox]

I’ve had MG of two years now with all the symptoms unless I’m on my Vyvgart infusions. I too have severe muscle spasms of my hands, fingers and leg muscle cramps . I have been taking fairly large doses of magnesium for several years and have not experienced any noticeable adverse symptoms since I was diagnosed with MG. Weather/heat and elevations/Height seems to be my most common nemesis to my MG… Still a lot of unknowns and magnesium may catch up with me long term. I’ve changed eye glass prescriptions 7 times this year but an unrelated MG topic for another time.. Hope that helps..

[Mary Ann]

I understand that the problem is with Manesium Sulfate but there are various forms and in one of my supplements is magnesium citrate and when I googled magnesium, it said this is an easier one on the body to absorb…..  I had among my supplements a Magnesium with 8 different varieties in it…  I stopped taking it, but have not noticed a problem with the other citrate one… Any advice?

 

[Thomas Lee Clark]

I have had a Thymectomy and since no symptoms at all. I am growing older which is a tolerable symptom. Doing so is much better not fighting MG. It was really bad.      Recently the urology doctor prescribed for me oxybutynin then I read the warning; Before using oxybutynin, tell your doctor if you have glaucoma, liver or kidney disease, an enlarged prostate, myasthenia gravis, ulcerative colitis, a blockage in your stomach or intestines, or a stomach disorder such as gastroesophageal reflux disease (GERD) or slow digestion.

I have been going to him (urologist)for years and this drug must be a standard but I have learned to police my drugs. This site is invaluable and even with the best docs we need to mind what we do. My primary tells me this often. Mg is illusive and a definite maybe disease.  I am thankful for this site.

[אורנה מונדשיין]

For avoiding muscle cramps try to drink once a day a glass of tonic water, without adding any alcohol!!

that is recommended by neorologist and helped my husband who doesn’t suffer from the muscle cramps.

[Mark Cox]

Thank you, I have not tried Tonic water without the alcohol for muscle cramps, I think I’ve tried about everything else such as Bananas, pickle juice, dark chocolate and others, the only thing that seems to work best is magnesium mixed with potassium. My doses have gotten higher as the years go by and cramps spread. I’ll give the Tonic water a shot. If it works for my cramps and I feel any improvements with my MG, I’ll certainly share the results with this forum.

kind Regards,

Mark

 

[Debbie Butler]

I take Magnesium Oxide 400mg a day for the horrible foot and leg cramps and it seems to work for me.

[Allan]

Is magnesium aspartame ok to take , I have been taking it for years now ,I suffered  a seizure because of low magnesium but I must say the steroids and azaphiaprine don’t seem to be working very well . Should I lay off it for a while?

[Eleanor]

I was diagnosed with MG in 2015 after taking Cipro for severe pneumonia several months prior. I could barely walk at all and my entire body felt heavy and weak. Fortunately my primary doctor’s NP recognized my symptoms and immediately called the private number for a neurologist who specializes in Myasthenia.
A few years ago, I started having severe muscle cramping and was told to eat lots of bananas and take magnesium. My cramps became worse and I broke out in a rash over most of my body. So I immediately stopped the magnesium and bananas. The cramping didn’t completely go away but did improve and the rash disappeared.
Since then I started taking peppermint flavoring in water prior to meals to prevent swallowing difficulties as recommended by a NP as an alternative to the expensive peppermint capsules. I also read to try coconut oil mixed with pure “therapeutic” peppermint from a local health food store. It’s $11 for a tiny bottle but it doesn’t take much. I add about 20 drops to a cup of coconut oil and mix well until smooth then put in an airtight container. At night I rub this on my toes, feet and ankles. I’ve never had those horrible, painful cramps since. I’m fortunate to have a neurologist who is an expert in Myasthenia and understands every patient is different. He allows me to decide if I need to take an extra dose of  generic Mestinon.  I’ve shared with him my experience with the peppermint and he approves.
I’ve only had one crisis that required hospitalization for 4 days but no ventilation.  But it was a frightening experience.  I monitor my symptoms carefully and when a flare up starts, I go to bed, take prednisone along with my Mestinon and drink liquids  until it passes. I also have a rescue inhaler I use. This works for me. If my breathing were to become very labored or shallow I would definitely go to the hospital.
I was given a medical alert card at a Myasthenia support group that states I have Myasthenia and not to use ambu bag on me. However, I somehow lost that card and haven’t been able to find another one. The support group was disbanded during Covid and because one of the leaders passed away was not started back up again.
If anyone knows where to get one of those medic alert cards I would appreciate the information.
They call this disease the “ snowflake” disease for a reason. We are all different.