Friday, December 27, 2013

Recommended Supplements for Myasthenia Gravis patients

By George Barron
Those of us with myasthenia gravis struggle to fight the disease on many levels. One of those levels is developing a nutritional balance that we believe will help subdue our symptoms. Most of the advice from doctors will be to eat a balanced diet and maybe suggest a vitamin and mineral supplement. However, many of us insist on trying different regimens and are constantly searching for the right mix of diet, exercise and effective nutritional supplements. In that spirit, I pass along the following suggestions that I personally use or read about while browsing a natural healing book.

From The Family Encyclopedia of Natural Healing
By John Heinerman and Lyndon H Smith

New testing technique for drugs to treat myasthenia gravis and epilepsy

Researchers from the University of Southampton, in collaboration with researchers at the University of Quebec at Montreal, have developed a new microsystem for more efficient testing of pharmaceutical drugs to treat diseases such as epilepsy cystic fibrosis, MG (myasthenia gravis) and epilepsy.

A large percentage of pharmaceutical drugs target ion channels, which are proteins found in a cell’s membrane, that play a pivotal role in these

Tuesday, October 29, 2013

Ronald E. Henderson - Attacking Myasthenia Gravis

I've just ordered this book by Ronald E. Henderson for myself and I thought I should put information about it on the blog. Several people have ordered Attacking Myasthenia Gravis from this site so I'm thinking we found a good one. It will be interesting to be able to read what Henderson, a doctor with myasthenia gravis hasto say about his experiences with the disease. And it sounds like Attacking Myasthenia Gravis is much more than his personal account. That's because it views at the disease from different perspectives - including others with MG. Henderson's  perspective is from that of a very active businessman that was forced to make huge changes in his life because of the MG.

Thursday, October 3, 2013

PossibleTramadol Connection to Myasthenia Gravis by Increasing Norepinephrine?

By George Barron
In my search to discover what may have happened that caused my immune system to against my body, I investigated the medications that I was taking before the onset of Myasthenia Gravis. One of those drugs was particularily interesting to me -Tramadol. It had been part of my daily intake for about four years before I developed MG in my early 60's. I have a strong suspicion that it contributed to my MG by pushing my adrenal system over the edge with it's norepinephrine-re-uptake action.

It is no secret that several drugs have been associated with either the

Sunday, September 22, 2013

Relaxation and Meditation prescription to relieve Myasthenia Gravis symptoms

by George Barron
If you have myasthenia gravis you're probably familiar with the inconvenient flares that even minor stress can bring on. Stress management is an important part of managing the disease. I've been exploring different ways of doing that and have learned a few things. It may be old news for some but for me, discovering relaxation and meditation techniques has been very helpful.

Maybe you've read about people claiming to relieve stress by practicing breathing techniques, listening to relaxation music or recordings of

Saturday, September 14, 2013

Scheduling life with Myasthenia Gravis around Mestinon Doses

by George Barron
When  I was diagnosed with myasthenia gravis, a small dose of Mestinon (15 MG) would get me through five or six hours before the mild symptoms (mostly speech difficulties) would return. It continued to be like that for about year. Not a big deal. I was beginning to think that mine would be one of the lucky cases that never got any worse. That wasn't to be the case. After three years it has become generalized with multiple symptoms and I now take 60 MG of Mestinon about every three hours. Because of that, and wanting to be as productive as possible, I've had to develop a routine that's largely based on the effective life cycle of the medication.

Friday, August 30, 2013

Drooping eyelid overlooked as symptom of Myasthenia Gravis

Jimmy Prince, diagnosed with MG
CHAPEL HILL, N.C. — There are times when a drooping eyelid could mean more than just a simple sign of getting older. More physicians should be on the alert that it could indicate the first signs of myasthenia gravis.

The symptoms of myasthenia gravis (MG), a rare autoimmune disease, vary and can be more easily associated with more common disorders, so many doctors misdiagnose it and as a result patients could go without proper treatment for years. Causing untold misery for the patient and their families.

Saturday, August 24, 2013

Myasthenia Gravis Medical ID Bracelet or Necklace a Must for Patients

Traditional Medical ID Bracelet
As myasthenia gravis progresses, sudden 'flares' or attacks can occur unexpectedly and often at awkward times. Wearing a medical ID bracelet or necklace can be a great benefit in explaining your situation to those around you and perhaps even save your life should you have a myasthenic crisis.

Often new MGer's are aware that they need a medical  ID bracelet but just never get around to ordering one. When symptoms are in the mild to medium range it's easy to forget that you

Friday, August 9, 2013

Treatment of myasthenia gravis with immunosuppression medication

Stephen W. Reddel, MB BS FRACP PhD, Sydney Neurology, Brain and Mind Research Institute, The University of Sydney, and Departments of Neurology and Molecular Medicine, Concord Repatriation General Hospital, Sydney AU. He is an expert in the treatment of myasthenia gravis .

Dr Reddel practices as a general neurologist and has particular interests including Neuroimmunology & Myasthenia Gravis, Neuro-ophthalmology, Neuro-genetics and Stroke.

While the following article is a bit technical, it is posted here because there are are nuggets of solid information contained in it. For those who are hoping to more deeply understand this strange disease, it will be well worth the read. Please note that Dr. Reddel is not directly associated with this website but his contribution is greatly appreciated.

Myasthenia gravis is an autoimmune disease which produces muscular weakness due to dysfunction of the

Saturday, July 6, 2013

Eat to Beat Myasthenia Gravis

As my own MG symptoms seem to be worsening and flareups increasing in frequency, I'm beginning to take the factors of diet and exercise more seriously. Traditionally not my favorite subjects. But  like most people with myasthenia gravis I do research from time to time -  trying to connect the dots of cause, symptoms and relief . Today it was about food and I did find an optimistic blog that has some good information on diet and links to very credible sources. I liked it, found it useful, and so I wanted to let you know about it. It's called Eat to Beat Myasthenia Gravis.

I was particularly pleased to see references to ginger* and turmeric roots; both of which I have incorporated into my diet. I was also happy to see that potassium can be found in other things besides bananas. Not that I have anything against bananas, I really like them. I just wish they came in different flavors because I eat so many of them. So join me in investigating how diet may help control our MG symptoms. And post a comment here to share what you've discovered. Let's learn how to Eat to Beat MG!

*Personally I use fresh ginger that I buy at an Asian (international) market.

Tuesday, July 2, 2013

New Study Concludes That Extrathymic Cancer is Likely with Late-onset Myasthenia Gravis

Daniel M. Keller, PhD
Jul 02, 2013

A recently completed study in Barcelona Spain concludes that Myasthenia Gravis patients have a higher risk of developing cancers other than those of the thymus gland. The new study shows that the extrathymic malignancies were hetrogeneous in their organs of origin and were all solid tumors.

There was no relation to a particular type of tumor according to Anna Pellise, MD, of the Neurology Department at the Joan XXIII University Hospital in Tarragona, Spain, reported here at the 23rd Meeting of the European Neurological Society (ENS).

Saturday, June 29, 2013

Tumor removed from thymus gland saves 13 year old from Myasthnia Gravis related death

Surgery removes tumor that caused Enya Dakin's myasthenia
 gravis (MG, a rare autoimmune disease)
 Picture: Jay Town Source: Herald Sun
Myasthenia Gravis can gradually develop and worsen over a period of months or even years. But sometimes it can strike with an immediate and powerful life threatening force. Because of a tumor on her thymus gland,  such was the case with 13 year old Enya Dakin. Myasthenis Gravis is a rare autoimmune condition. It is a neuromuscular disease in which the body generates an immune system attack against its own skeletal muscles. 14 out of every 100,000 persons in the USA suffer from the disease. 

Enya is lucky to have been diagnosed relatively quickly. And because of the severity that it

Friday, June 14, 2013

Some "Do's" and "Don'ts" for Myasthenics

Even though I've been living with MG for about two years, it's amazingly that sometimes I forget that I have it. So I also forget to take care of myself properly and to avoid situations that will aggravate it. Then too, I will sometimes do something that I know is risky or flat out stupid. That's crazy, I know, but it's true. For those reasons I will, from time to time, seek out articles about living with myasthenia gravis - just to remind myself about what I should and shouldn't do. That can be a lot of reading. But the following list of do's and don'ts, provided by the British Association of Myasthenics, makes getting a refresher course quick and easy. It would also be helpful for close friends and family in understanding the disease. Feel free to bookmark this post so you can come back for a review once in awhile yourself.

Do's and Don'ts for Myasthenics

Tuesday, June 4, 2013

Job Stress Connection to Myasthenia Gravis?

While the association of stress and myasthenia gravis isn't a news flash, I'm thinking that it might follow that there's a job stress connection to contracting the disease.

Last Friday was my last day at work. The staff and the new owners threw a nice going away party for me. I'm actually retiring after 25 years in the advertising and direct mail business. In the back of my mind, I feel that the stress of running a small business was at least partly responsible for my developing myasthenia gravis. .

Like many small business owners, my business

Friday, May 24, 2013

Myasthenia gravis with superimposed spinal cord injury: a case report.

Both myasthenia gravis and traumatic spinal cord injury are uncommon disorders and their concurrence is extremely rare. We report here the case of a man with stable myasthenia gravis with spinal cord injury due to a motor vehicle accident. His muscle strength and sensory function in all 4 limbs partially recovered during the initial hospitalization. However, after a later episode of pneumonia and urinary tract infection, muscle strength deteriorated and weakness of the ocular muscles occurred. A relapse of myasthenia gravis was confirmed by the elevated anti-acetylcholine receptor antibody titre. Muscle strength recovered rapidly after control of infection and treatment of myasthenia gravis exacerbation. In this case report, we show that spinal cord injury-related complications, including infection or emotional stress, could

Sunday, April 14, 2013

Myasthenia Gravis Will Travel

One of the odd things about having Myasthenia Gravis is how the muscle weakness can travel from one area of the body to another.I never know where it's going to show up. At one time of the day it can hit only the thighs or maybe the hip area and later it could be the eyes - one or both. Localized and random. And there can be times that it hits everywhere at the same time. Said another way; the symptoms of Myasthenia Gravis can show up anywhere at anytime. Or not at all. That's one of the reasons that it's so hard to

Sunday, February 17, 2013

2013 Las Vegas Walk To Support Myasthenia Gravis Research (MGFA)

2013 Las Vegas MG Walk
Saturday, March 9, 2013

Sunset Park, Las Vegas, NV
Check-In at 9:00am; Walk at 10:00am
Choose from a 1-mile or a 3-mile route

Team Recruitment Week; February 11-15!
Attention all Team Captains, or soon to be Team Captains...The MG Walk Team with the most NEW members this week will receive an MG Walk Fleece and an MG Walk Saddle Bag.

Register your Walk Team today to participate and may the odds be ever in your favor!

Saturday, February 2, 2013

Unique Supplement Recommendations for MG from the Controversial, Dr. Blaylock

Many MG patients look to control their symptoms with the use of vitamins,supplements and by changing their diet. Most advice on the subject will will list dozens of supplements and end with something like, "eat a healthy, well rounded diet." What I like about the following little blog post by this Dr. Blaylock person is that the answer to the supplement question was both short and logical. I happen to not agree with all of it but who am I to say? Regardless of whether it's a good prescription or not (you'll have to do the research on that) he's direct and to the point. I do  like that. So for what it's worth, here's what Dr. Blylock recommended when questioned about somebody's friend that has Myasthenia Gravis.

Saturday, January 26, 2013

Police Recruit Wins Battle Against MG

by Lori Chung
SCHENECTADY, N.Y. -- "It's a big moment and I've been waiting for this my whole life," said police recruit, MGMichael Palmerino, 23. It's a dream fulfilled. But for Palmerino, the journey to this moment was hard fought and filled with hurdles. Chief among them was a rare, debilitating illness. "At times I couldn't talk, I couldn't chew or swallow food, [and] I lost a lot of weight." Two years ago, Palmerino was suddenly stopped in his tracks, and doctor after doctor failed to figure out the problem. "They really just didn't

Wednesday, January 23, 2013

Mestinon (Pyridostigmine) for Myasthenia Gravis

Mestinon Tablets

The first line of treatment for Myasthenia Gravis is typically Acetylcholinesterase inhibitors. These medications boost the amount of acetylcholine available for neuromuscular transmission by impairing the breakdown of acetylcholine at the synaptic cleft. Pyridostigmine (Mestinon) is the main acetylcholinesterase inhibitor used. Other agents, such as neostigmine (Prostigmin), are available but are rarely used. A generic form of pyridostigmine became available in the fall of 2003. Pyridostigmine provides only symptomatic treatment, but in some patients is the only therapy needed. The effects of pyridostigmine may be noticed 15 to 30 minutes

Thursday, January 17, 2013

Viral Connection to Myasthenia Gravis Confirmed

Dec. 19, 2012 / Science Daily — Why would our immune system turn against our own cells?

This is the question that the combined Inserm/CNRS/ Pierre and Marie Curie University/Association Institut de Myologie have strived to answer in their "Therapies for diseases of striated muscle," concentrating in particular on the auto-immune disease known as myasthenia gravis. Through the project known as FIGHT-MG (Fight Myasthenia Gravis), financed by the European Commission and coordinated by Inserm, Sonia Berrih-Aknin and Rozen Le Panse have contributed proof of the concept that a molecule imitating a virus may trigger an inappropriate immune response, causing muscular function to deteriorate.
These results have been published in Annals of Neurology, accessible on line.

Sunday, January 6, 2013

MG Severity Linked To MuSK Antibodies

By Sally Robertson, medwireNews Reporter

Patients who have myasthenia gravis (MG) are more likely to have a severe form of the disease and more difficulty achieving remission if they are seropositive for antibodies to muscle-specific kinase (MuSK), report researchers.

"These features should be considered by the clinician in the management of this particular form of MG," say Carlo Antozzi (Neurological Institute Foundation "Carlo Besta," Milan, Italy) and colleagues.