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Posted on 21. June 2012

Diagnosing and Treating Myasthenia Gravis

By Carla Schick

Myasthenia gravis (MG) is a chronic health condition that affects many of our immune globulin (IG)-treated patients and countless others who have gone undiagnosed. Since June is MG awareness month, we thought it might be a good idea to talk about the various tests and treatment options for MG.

What Is MG?
Myasthenia gravis is a chronic autoimmune neuromuscular disease that affects the strength of voluntary muscles, including eye and eyelid movement, facial expressions, chewing, talking, swallowing and occasionally other muscle groups. The cause of MG lies in the neuromuscular junction - the location where nerve cells connect with the muscles they control. When normal communication is possible between the nerve cells and their corresponding muscles, impulses will travel down the nerve and release a neurotransmitter called acetylcholine. As the acetylcholine travels from the neuromuscular junction and binds to acetylcholine receptors, the receptors become activated and generate a muscle contraction. However, when the receptors are blocked by antibodies, communication between the nerve and muscle is interrupted, preventing the muscles from contracting. These antibodies are produced by the body’s immune system to guard against foreign organisms, but instead of assisting the body, the antibodies mistakenly go on the attack, resulting in destroyed receptors.

Testing
Because muscle weakness is often a symptom of many disorders, a diagnosis of MG is often delayed, particularly if a patient displays only mild or restricted muscle weakness. The first step the doctor can take is to review the patient’s medical history and conduct physical and neurological examinations. The physician can also check for impaired eye movement, one of the first perceivable symptoms. If MG is the suspected diagnosis, a special blood test can detect the presence of acetylcholine receptor antibodies, which are abnormally high in most MG patients.

Another exam is the edrophonium test, which uses intravenous administration of edrophonium chloride to temporarily block the breakdown of acetylcholine and momentarily increase the levels of acetylcholine at the neuromuscular junction. A nerve conduction study records weakening muscle responses that may demonstrate impaired nerve-to-muscle transmission.

A small fiber electromyography (EMG) can measure the electrical potential of muscle cells when single muscle fibers are stimulated by electrical impulses. Muscle fibers in MG patients do not respond well to repeated electrical stimulation. Diagnostic CT or MRI scans of the chest can be used to detect the presence of thymoma, a tumor that can develop on the thymus gland. The tumors are generally benign, but an enlarged thymus gland may give the wrong commands to developing immune cells, resulting in the production of acetylcholine receptor antibodies.

Treatment
Currently, there is no cure for MG, but there are many treatment options to help control and reduce muscle weakness. One of these treatments is intravenous immunoglobulin (IVIG) therapy. Although IVIG is an off-label treatment method for MG, many patients have found that IVIG infusions have given them more than encouraging results. Lisa Langhals, an MG patient who was diagnosed seven years ago, says: “It was like being in a dark room and then turning on the light. The first day or so, you don’t feel well. But then, it’s like it’s all gone. The change is that drastic.”

Other treatment options include plasmapheresis, a procedure in which serum containing the abnormal antibodies is removed from the blood while cells are replaced. Immunosuppressive medications like prednisone can be taken to improve muscle strength by suppressing the production of abnormal antibodies. And a thymectomy can be performed, which may reduce symptoms in some MG patients.
These are just a few of the tests and treatment options available to MG patients and those who think they may be suffering from MG.

To learn more about the information found in this blog, please visit the National Institute of Neurological Disorders and Stroke's Myasthenia Gravis Fact Sheet.

Tell us how MG has impacted your life.

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Comments (10) -

Donna Hiebert
6:48 AM on Friday, June 22, 2012

The first year after the onset of MG I thought I would die from the symptoms they were so severe.  I saw three of everything if I could get my eyes open, I could not speak or swallow, my arms and legs were very week and shakey.  The medicaiton gave me terrible side effects.  My breathing had became impared because of the weakness of the muscles needed to breath. When I could focus my eyes and keep my eyelids open to research on the internet I discovered IVIG and ask my physician about if it was a possability for me.  He said the insurance company did not recognize it as a viable treatment but he had some patients who benefited from the IVIG.  Well three months after starting the treatment my sysmptoms were almost non existant and my life had come back.  I am now five years out on the IVIG treatments and I work every day and and can have my 10 grandchildren for two weeks every summer for a visit.  I thank the Lord for IVIG, it has given me back my life.  

Donna Hiebert
7:17 AM on Friday, June 22, 2012

I was diagnosed with MG 5 years ago.  For the first year I felt like my life was over.  My symptoms were so severe.  My breathing became impared, my eye lids would not stay open and if they were open most time I could see at least three of every thing.  I could not chew, swallow or talk.  The disease move around my body and it was anybody guess what would be effected on any given day.  I discovered informaiton about IVIG on line and talked to my physician about the treatment.  He informed me that the insurance companies did not consider the treatment worth while for MG patients but he has some success with his patients and the treatment.  I started treatment and three months later I had my life back.  My sysmptoms were almost completedly masked with the treatment.  The medicine I received before IVIG was terrible and gave my awful side effects.  I now am able to work everyday and have my 10 grandchildren every summer for two weeks.  Thank you IVIG.  

Susan Klinger
7:27 AM on Friday, June 22, 2012

Thank you for posting June is Myasthenia Awareness month.  Patients should note that the logo attached to the article belongs to the Myasthenia Gravis Foundation of America, Inc. (MGFA) which is not mentioned directly in the blog article.  The MGFA can be directly reached on www.myasthenia.org or 1 800 541-5454.

Susan Klinger
Board Member, MGFA  (and IVIg MG patient)

Michael
10:54 AM on Friday, June 22, 2012

I was diagnosed with MG in 2005.  I began IVIG treatments in 2006 since the MG was in my chest muscles and I had difficulty breathing.  It was also in all of my head, eyes, throat, etc. and my legs.  We started bi-weedly treatments and I was able to live somewhat normally.  But the disease progressed and we now receive weekly IVIG treatments.  The treatments give me 2-4 days of relief from the worst symptoms, i.e. my chest and legs, but then I start going downhill until the next treatment.  I have 4 other autoimmune diseases and a severe spinal problem, but the IVIG treatment allows me to live and enjoy life.

Susan Klinger
11:49 AM on Friday, June 22, 2012


MG patients should be aware and make their doctors aware that in April 2012 an article was published in the journal "Neurology" from the AAN, the American Academy of Neurology which talks about positive research on the use of IVIg including moderate and severe MG.  Having this positive research published in a well respected medical journal is a major step to getting insurance companies to cover IVIg for MG.

The link to the overview of the article is:
www.aan.com/.../index.cfm

Below is an except that specifies myasthenia and related diseases.

"The guideline also found that IVIg is effective in helping to treat moderate to severe forms of myasthenia gravis and a rare condition known as multifocal motor neuropathy. It may also be helpful in treating neuromuscular disorders known as nonresponsive dermatomyositis and Lambert-Eaton myasthenic syndrome."

Philip Aitken-Cade
6:41 AM on Friday, July 20, 2012

I was diagnosed with MG in November 2010 when I ended up in the ER because I could not talk, swallow, feel my legs, etc.  A blood sample was sent to the Mayo Clinic that confirmed a positive MG condition.  After a month in the hospital with feeding tubes, respiratory therapy, and 7 IVIg treatments I started a regimen of Mestinon and Cellcept plus monthly IVIg.  Now 2 years later I receive IVIg once every five weeks and continue the Mestinon and Cellcept pills.  As a farmer life has had to adapt to loss of energy and muscle weakness but my wife and I continue operating our farm at a slower pace than in previous years.  I now have many good days but occasionally have a day when I cannot leave the house - then I catch up on easier chores indoors.

April
10:19 AM on Friday, September 28, 2012

I HAVE HAD mg SINCE AGE 15(I M 46 NOW)IT 'S BEEN A CONSTANT BATTLE. I H MY THYMUS REMOVED, PLAMSAPHERISIS,MEDS, AND IVIG.. I JUST GOT OUT OF THE HOSPITAL AFTER 34 AY. THIS LAST TREATMENT OF IVIG I DIDN'T RESPOND LIKE PRIOR TREATMENTS WHICH i HAVE BEEN GETTING EVERY 3/4 MONTHS OVER 5/6 DAYS; SO THEY DECIDED TO DO THE PLASMAPHERSIS 7 EXCHANGES. DOES ANYONE ELSE HAVE THAT EXPIERENCE OF THE IVIG LOSING IT'S EFFECTIVNESS?? i WAS IN ICE ON A BREATING MACHINE.. IT WAS HORRIABLE.. MY PRIMARY DOCTOR EVEN SAID I HAVE TO FIND A NEW DR BECAUSE OF MY COMPLICATED CASE..I LIVE IN SOUTH FLORIDA AND ONLY HAVE MEDICADE, SO MY CHOISES R LIMITED..

I.G.Living
5:36 AM on Monday, October 01, 2012

Hi April.

First of all thank you for reaching out to us. I wanted to take a moment and respond to your comments above.

I would recommend University of Miami Neurology. They take Medicaid and have several physicians on staff who are neuromuscular/MG experts. To answer your concern regarding IVIG; yes it can lose it’s effectiveness. By any chance have you been on steroids and/or immune-suppressants? I’m wondering because your post didn’t state specifically what meds you are taking, but that could have an influence on your situation. Lastly, there are different antibodies that cause MG and also determine severity and treatment. Rituxan is now given for refractory MG, with great results.

I hope you find this information helpful. Should you want to discuss your situation any further, please contact me directly.

Best regards,
Annaben Kazemi
Patient Advocate I.G. Living Magazine

Sherry Mora
10:00 PM on Saturday, October 27, 2012

My name is Sherry, and I was diagnosed with MG November 2010. I am currently on IVIG treatments. I had my first crisis in June and the Dr. put me in the hospital for 5 days. I lost total muscle weakness in my neck could not hold my head up at all. I got very weak, and I work part time and I noticed the weakness in my arms and legs. I have 3 mo re sessions to go. The IVIG is working along with the prednisone, and Mestinon, cellcept. My diabetes was under control my Dr. cut back most of my medications. Once i started the pred, my blood sugars are out of control, sometimes as high as 250-400. I'm on an insulin scale and It makes me get alot of anxiety. I have bad headaches once i'm done with my IVIG, they need to slow down the drip. I get home and go into my room where it is dark and in a couple of hours i feel better. I feel good and my muscles in my neck and weakness is gone. Went to my first MG support group this after noon and I finally got to talk w/people that have what I have and their experiences. When I was diagnosed I asked what MG was I had no clue. Looking forward to another meeting on November 4th in L.A.

Lilly Monks
7:08 AM on Wednesday, May 08, 2013

I was visiting to my mother home, while traveling I found my eyelids closing and was diagnosed positive for mysthenia gravi also found symptoms like leg weakness. After that I consult with my family doctor, and as he prescribed Mestinon medication have been taking and notice the improvement right away.

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IG Living Blog | How Not to Feel Like a Victim When Managing Chronic Illness
IMMUNE  GLOBULIN  COMMUNITY
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Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 2. March 2017

How Not to Feel Like a Victim When Managing Chronic Illness

By Christine Wolf

No matter where you are in your journey with chronic illness, you are not alone. At any point, it’s all too easy - and common - to feel like a victim. But, the journey can be made easier by understanding chronic illness’ three phases, and then finding ways to acknowledge your diagnosis and take care of yourself.

Three Phases of Chronic Illness

1. Initial stage

In the initial stage, you might experience the following frustrations:

  • Unanswered questions - What are the possible diagnoses? Who could best treat them? What process should you follow? What’s the best protocol? Why is this happening? Could you have prevented this?
  • Feelings of abandonment - We’ve grown up thinking our doctors have all the answers. When they don’t, we tend to feel untethered from those we trusted to guide us.
  • Obsessed with finding answers - Armed with an Internet connection, these questions and feelings have a way of making their way into search engines and online forums, compounding feelings with a multitude of conflicting perspectives and approaches.

2. Mid-journey stage

This stage is filled with mixed emotions. At some point, a doctor is seen. Is it the right one? The symptoms and history are described, and an approach is recommended. Maybe you hit the jackpot and find the right doctor who makes the right diagnosis and prescribes the protocol you need to start feeling better immediately. If this is the case, please pen an article titled “I Am the Rare Exception to Living with Chronic Illness.” Unfortunately, that doesn’t happen for the majority. Instead, we face:

  • An inability to access treatment (doctors overbooked; financial constraints).
  • Conflicting diagnoses or protocols.
  • Insurance denials.
  • Moments of panic.
  • Highs and lows - feeling like you’re getting closer to the “end,” only to experience a setback, suffer from a new symptom or gain perspective that the end is not as near as you believed.
  • Challenges with others who question or doubt your struggles, particularly if symptoms aren’t visible or answers are not clear.
  • Consuming, intense feelings that your health issues define you.
  • Certainty that you’re missing something.
  • Feeling that you’re approaching things incorrectly.
  • Worry that you’re not up to date on the latest research.
  • Concern that you are a “problem”.

3. Resolution

This stage of the journey is the most important because it is, after all, pure fiction. A resolution will not be reached, because chronic illness is not cured but, rather, managed. And only when you drop anchor in this sea of radical acceptance will the churning waters eventually calm. So how do you “set anchor” sooner than later?


Acknowledge the Obvious

Your challenges are incredibly difficult. This isn’t easy. Honor yourself by acknowledging your struggles and feelings, including your:

  • Pain
  • Confusion
  • Frustration
  • Sense of loss
  • Exhaustion
  • Depression
  • Anxiety
  • Anger
  • Resentment
  • Desire to want to give up.
  • Jealousy toward others who don’t deal with this.
  • Wish that someone would manage this for you.

Practice Self-Care

It might be the last thing you believe, but there truly is life beyond these challenges. You may even have to force yourself to accept that fact. But the sooner you do, the better you’ll navigate the journey. So do whatever it is that gave you joy before the challenges, even if modification is required. Or try something brave and new.
You’ve got this, even if it’s something as simple as:

  • Reaching out to friends.
  • Taking a walk.
  • Meditating
  • Practicing deep breathing.
  • Binge-watching a series on Netflix.
  • Journaling
  • Cooking
  • Volunteering
  • Seeing a therapist.
  • Joining a support group.

Gift Yourself the Time to Grieve

This isn’t what you signed up for, so there will be an unspoken “loss” about how you thought things would go. It’s completely natural to question why you “didn’t see the signs sooner.” But beating yourself up and pushing yourself to keep a brave face at all times are just roadblocks along the way. Allow yourself time for sadness and contemplation. Try not to stuff your feelings. Instead, take back your power, and overcome feelings of helplessness by allowing yourself to experience and express the complicated emotions chronic illness brings. You might have tears, anger and deep sadness. And if you’re like most of us, you may even look for ways around the struggle. But once you’ve fully grieved what was, you can move forward with acceptance about the enormous strength this journey requires - and discover you’re more than capable of staying the course.

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Comments (4) -

Sally C Jones
11:59 AM on Friday, March 03, 2017

Living near Boston has given me more knowledgeable physicians than many people have. I have lived with CVIDS including RA & OA, bronchectisis, and unbelievable exhaustion for more than 16yrs.  It took years to get my husband to understand that he couldn't just "fix me."
My advice is to keep an upbeat attitude each day. My husband helps me a lot doing the cooking, laundry, and grocery shopping. I help in whatever way I can, even if my help is just sitting with him and reading the recipes to him. Give him praise rather than instruct him on a better way to proceed unless he asks for advice.
In my early and middle stages, I wanted to tell everyone about all the fascinating things I had learned about my illness. People really don't want to know!!  So, find a good hematologist, pulmonologist, orthopedist, physiatrist and rheumatologist and keep your complaints to the correct specialist.
To everyone else, when asked how you are doing either say with a smile, "Up and Down" or " Ok, just don't look under the hood!"

Kim
1:51 PM on Tuesday, March 07, 2017

The other day a fellow CIDP stated, what choice do we have.  We have many.  We do not have to take IG.  We could choose to do nothing.  Some do not get this choice.  We can or cannot chose to change our diets.  We chose to go to therapies.  We have choices or we become victims to our diseases.  I chose the best decision for me.  I am not a victim, I did not chose chronic illness, it happened.  I work to make the best of it I can.  We chose everyday, how to continue on.  We can be a victor or a victim, that too is a choice.  

Daniel
9:16 AM on Monday, March 27, 2017

Hi Guys, I'm helping a friend who's suffering from fibromyalgia. Does anyone ever tried using cannabis as an alternative meds? I have read many articles suggesting highly concentrated cannabis oil can be effective for people suffering from fibromyalgia. So far northern lights strain is on top of my list. I got it's details from www.ilovegrowingmarijuana.com/northern-lights/. Any help or personal testimonials is much appreciated. Thanks

Elizabeth Howard
10:32 AM on Friday, March 31, 2017

I saw on page 7 of the latest issue of IG Living Magazine that someone was interested in information on Stiff Person Syndrome.  Do you have an event page that you can put an ad for a symposium on Stiff Person Syndrome in May.
www.eventbrite.com/.../2nd-annual-stiff-person-syndrome-sps-symposium-tickets-32941472832

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