Myasthenia gravis

Posted on autoimmune conditions

Autoimmune Disease: A Food-based Approach

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An estimated 23.5 million people in the United States are living with an autoimmune disease, such as type 1 diabetes, Crohn’s disease, multiple sclerosis, rheumatoid arthritis, or myasthenia gravis. These diseases afflict women more than men and are among the leading causes of death for young and middle-aged women.

Collectively, these diseases are becoming more common around the world. Side effects from some of the medications to treat them can be harsh, so those living with these conditions may look for natural and less invasive ways to manage these diseases. But can the right diet help tame an autoimmune disease?

Learn how nutrition and your diet may help to manage some of these conditions during this free online webinar on Autoimmune Disease: A Food-based Approach.

The expert panel is comprised of:

Leigh Frame, PhD, MHS, is an assistant professor, Department of Clinical Research and Leadership, program director, Integrative Medicine Programs, and executive director, Office of Integrative Medicine and Health. Dr. Frame brings nutrition and immunity together through clinical/translational research. She has used her wide-ranging experience in biomedical research (from wet bench to clinical research) to oversee research programs, including the National Institute of Neurological Disorders and Stroke (NINDS) Parkinson’s Disease Biomarkers Program.

Susan LeLacheur, DrPH, MPH, PA-C, BS, is a professor in the Department of Physician Assistant Studies at the GW School of Medicine and Health Sciences. Dr. LeLacheur has more than 35 years of clinical experience in primary care, HIV/AIDS, and infectious disease. She is the section director for the GW PA Program’s Foundations of Medicine Gastroenterology Section. Her ongoing clinical practice at Whitman Walker Health in Washington, D.C. includes both primary and HIV care.


Lara Zakaria, RPh, MS CNS IFMCP, is an Institute for Functional Medicine Certified Practitioner, nutritionist, pharmacist and public health professional based in New York City. She combines evidence-based nutrition and complementary medicine, including positive psychology, to inspire patients to use whole food, herbs and lifestyle modification to optimize their health. Her training in drug-drug and drug-nutrient interactions also gives her a unique perspective on helping patients optimize their medication and supplement programs.

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Myasthenia gravis – signs , symptoms and causes




Myasthenia gravis

Myasthenia gravis

 

Myasthenia gravis is a rare long-term condition that causes muscle weakness that comes and goes.

It most commonly affects the muscles that control the eyes and eyelids, facial expressions, chewing, swallowing and speaking. But it can affect most parts of the body.




It can affect people of any age, typically starting in women under 40 and men over 60.

 

Symptoms of myasthenia gravis

Common symptoms of myasthenia gravis include:

droopy eyelids

double vision

difficulty making facial expressions

problems with chewing and difficulty swallowing

slurred speech

weak arms, legs or neck

shortness of breath and occasionally serious breathing difficulties

The symptoms tend to get worse when you’re tired. Many people find they are worse towards the end of the day, and better the next morning after getting some sleep.

Read more about the symptoms of myasthenia gravis.

When to see your GP

See your GP if you have long-lasting or worrying symptoms that could be caused by myasthenia gravis.

They will ask about your symptoms and medical history.

If your GP thinks you could have a condition like myasthenia gravis, they may refer you to a specialist for tests to help diagnose the condition or look for other possible causes of your symptoms.




These tests may include a blood test, a test of how well your nerves are working and some scans.

Read more about tests for myasthenia gravis.

Treatments for myasthenia gravis

Several treatments are available to help keep the symptoms of myasthenia gravis under control.

These include:

avoiding anything that triggers the symptoms – some people find that things such as tiredness and stress make their symptoms worse

medication to help improve muscle weakness

surgery to remove the thymus gland (a small gland in the chest linked to myasthenia gravis) – read about the causes of myasthenia gravis for more information

If the symptoms get suddenly worse – for example, you develop severe breathing or swallowing difficulties – you may need urgent treatment in hospital.

Read more about how myasthenia gravis is treated.

Outlook for myasthenia gravis

Myasthenia gravis is a long-term condition that typically has phases when it improves and phases when it gets worse.

It usually affects most of the body, spreading from the eyes and face to other areas over weeks, months or years. But in around one in five people, only the eye muscles are affected.

Treatment can usually help keep the symptoms under control so that people who have myasthenia gravis are able to live largely normal, symptom-free lives. Very occasionally it can get better on its own.

The condition can be life-threatening in severe cases, but it doesn’t have a significant impact on life expectancy for most people. In many cases, the symptoms are at their worst in the first two or three years after diagnosis.

Cause of myasthenia gravis

Myasthenia gravis is caused by a problem with the signals sent between the nerves and the muscles.

It’s an autoimmune condition, which means it’s the result of the immune system (the body’s natural defence against illness and infection) mistakenly attacking a healthy part of the body.

In myasthenia gravis, the immune system damages the communication system between the nerves and muscles, making the muscles weak and easily tired.

It’s not clear why this happens, but it has been linked to issues with the thymus gland (a gland in the chest that’s part of the immune system).

In many people with myasthenia gravis, the thymus gland is larger than normal, and in around 1 in 10 people there is abnormal growth of the thymus called a thymoma.

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Myasthenia Gravis Awareness Month June 2015 – Please share this Facebook Cover to show your support!


Myasthenia Gravis Awareness Month June 2015

Myasthenia Gravis Awareness Month June 2015

June is Myasthenia Gravis Awareness Month.

To mark this event we have produced a Facebook cover. It would be great if you could use this on your Facebook or Twitter profiles even for an hour to raise Myasthenia Gravis awareness.

To find out a bit more about the signs and symptoms of this autoimmune condition please have a look at our previous blog on Myasthenia Gravis here.


5 Comments Posted on Diet, Multiple Sclerosis

Difficulty swallowing? Find out how other people cope with Oropharyngeal dysphagia!




Difficulty swallowing Oropharyngeal dysphagia

Difficulty swallowing Oropharyngeal dysphagia

Swallowing disorders (or more properly called Oropharyngeal dysphagia) can occur at any stage of somebodies life. It can occur for a whole range of reasons and can even be hereditary! Oropharyngeal dysphagia is often associated with conditions like multiple sclerosis (MS), Parkinson’s disease, stokes, brain tumours, amyotrophic lateral sclerosis, Bell’s palsy, and myasthenia gravis.




In this post we are looking at the underlying causes of your swallowing problems, how they were treated and with what success.   It would be great if you could use the comments box below to share your Oropharyngeal dysphagia experience.

Current treatments include surgery, Palatal lift prosthesis, electrical stimulation as well as more general physiotherapy, using a bolus or just a change in diet.

So with that in mind we would like to think about some of the following questions about your swallowing difficulties:-

What was the cause swallowing problem?  Was it a medical issue?

What was the effect of swallowing difficulties on your lifestyle?   In particular how has it impacted your eating habits and diet?

What treatments for Oropharyngeal dysphagia did you receive and dis they actually work?

If you had to give one piece of advice for somebody who has just started to show signs of a swallowing disorder what would it be?

Thanks very much in advance.  It would be great if you could share this with other people who might be interested in sharing their experiences.




 

suzyqw I am seeing a speech pathologist. She has me doing all kinds of mouth & tongue exercises. She also taught me to turn my head to the side & point my chin down to make swallowing easier. That is what has helped me more than anything. I realize that it is common for us as ms patients. I don’t want more drugs to so call fix the problems. My food seems to get stuck in the middle of my throat. It’s random but I can tell when I start eating something if it will happen or not. I have also noticed it seems to intensify with hot foods. See a speech pathologist. They can help with swallowing.
fedupandconfused the most difficult thing is that just when you think you’ve finished with noticing things something else crops up and because its random you don’t know if it’s worth mentioning or even if it’s related and besides you don’t want to sound neurotic. I’ve not been diagnosed as yet but swallowing has been one of those things that seemed odd to keep happening. Initially i thought it was random but over the last year it’s progressed. The first time was when I ate a chunk of tuna and it got stuck I literally lost my breath and thought I would die. I was able to take a gulp of water down inbetween bringing bits back up. At the time I put it down to tuna being fairly dry. Then over time with various different foods on occasion I have managed to swallow but it felt like I’d got it stuck in my lungs and i haven’t been able to cough it up. And recently I’ve noticed I need to let my food completely cool down before I eat it which is strange as I’ve always eaten my food really hot. And now I have to let it cool down, eat a little bit, leave it then go back again when the last lot has gone down. I have also recently noticed when I swallow it seems to stick like a ball in my stomach or inbetween the osophegus and into the stomach. I find myself standing up to get it to “slide down” and once that ball/knot has gone I can start the whole eating process again. It could be coincidence and I never realised it’s another possible symptom til I saw this site.
[…] Since the dawn of humanity, one thing that motivates us on the basest level is eating. Early humans had to learn to hunt to put food in their mouths and stomachs. Modern men go through life, doing their jobs to earn the means to be able to put food on their plate. When it comes to the basic means of survival, being able to eat the food that we need in order to live is one of the very first ones that need to be met. And because this is a basic need, eating of course comes naturally to us. We eat everyday of our lives, from the very first moment we were born. Eating then involves digesting. The first process of digestion starts at the mouth, where food is ground and chew so it can be swallowed. Eating and even swallowing itself seems like such an inconsequential act, made so normally and so innocuously by every human being on earth. So what happens when a person has difficulty swallowing? […]
BonnieLass1 mj1daisy I wish I had a clue. Everyone’s MS is so different. I randomly just forget how to swallow. It’s strange that something that should be so natural suddenly becomes something you have to actually think about doing. I would say that your doctor or a second opinion would be the way to go. Some things are hard to explain when it comes to MS and weird symptoms like not being able to swallow. It is scary though and I always end up choking and throwing up because I can’t catch my breath when it happens. I wish you the best of luck.
mj1daisy I have difficulty with swallowing. It’s kind of sporadic with both solids and liquids. I had a barium swallow done and because I thought I just had acid reflux but it turned out to be “nonspecific motor in coordination of the esophagus” that was before I was diagnosed with MS so they went even ruling an MS symptom out. I wonder what they would say now???
It feels like a rock or somethings hard gets stuck and I have to stop swallowing for 30 seconds or more for it to stop hurting. Could it be esophageal spasms??
BonnieLass1 I have trouble swallowing but I have not received any treatment for it. Mine is MS relapse related and seems to happen randomly. I noticed that it was more when I was fatigued. I don’t have to be eating..I just forget to how to swallow. I panic normally then choke and throw up from it. Tears running down my face and gasping for air. Its something that I can’t seem to predict and normally when I am fatigued it happens more often. The higher dose of solumedrol that I am on the less it happens. Its something that I need to discuss in my next visit I am sure.
2 Comments Posted on Patient Talk

Myasthenia gravis – What is Myasthenia gravis? What are the signs and symptoms of Myasthenia gravis?




Myasthenia gravis

Myasthenia gravis

Welcome to the latest in our series of informational blog posts which look at various different autoimmune conditions.  Today we are exploring Myasthenia gravis – looking in more detail at the signs, symptoms and treatments of this condition.  To find out more about autoimmune conditions in general please have a look at our previous post on the subject https://patienttalk.org/?p=939.

As always if you are concerned that you have any of the symptoms of Myasthenia gravis  we would advise you to see a healthcare professional as soon as possible.

So what is Myasthenia gravis?




It is an autoimmune condition which affects 1 in 10,000 people in the UK; according to the NHS.  Interestingly it seems to, typically, effect women under 40 years of age and men over 60.

Simply put it is a condition which leads to muscle weakness.  In particular voluntary muscles which control the movement of things like chewing and swallowing as well as the eyelids.  In more serious cases it can affect those muscles used in breathing.

Typical symptoms include:-

Problems with the eyes are often the first noticeable symptom.  This could include double or blurred vision.  Droopy eye lids are also common.

Dysphagia or difficulty swallowing.  This often leads to slurred speech.  Again a common symptom.

Breathing difficulties in bed or when exercising.

A myasthenia crisis can occur because of swallowing or breathing issues and leads to hospitalisation

Movement issues such as difficulty walking or a drooping head.  This makes physical labour harder for the patient.

Myasthenia gravis occurs because  the body’s immune system creates proteins which attach the muscle receptors.

Treatments typically consist of immunosuppressants and if symptoms persist a steroid treatment may be employed.  In a few rare cases, where the patient is over 60, it may be considered necessary to remove the thymus gland in an operation called a Thymectomy.  This operation can help the immune system rebalance itself.  Where problems with swallowing have become very serious then intravenous immunoglobulin therapy could be applied in a hospital setting.

Do you have Myasthenia gravis?  If so we would love it if you could tell your story.  Please use the comments section below to share anything you think will be of interest.  In particular please could you think about the following questions:-

1)      What were your first symptoms of Myasthenia gravis?

2)      How were you diagnosed?  How long did it take and were any other conditions ruled out?

3)      What treatments have you received and who effective were they?

4)      What was the effect of Myasthenia gravis on your lifestyle?

5)      What one piece of advice would you give to somebody who has just been diagnosed with Myasthenia gravis?

Many thanks in advance for all your help!




 

LyneneLGros I was 2 1/2 yrs old when i was diagnosed. Im 41 and have never lived with this disease. My mother was told i would die at 15. Im a walking and seeing miracle! God has healed me. Ill always owe him my life for giving me life.
mamajanie In my hubs case eye issue was in 2010…drooping lid double vision…dr. visit yeilded a prism in lens….over the years weakness…started c-pap june 2013 with developing jaw issues, and throat, allergies…ent dr. Found nothing…heart lung Dr. Foynd nothing…fell 2-3 times…neuroligist diag. Mg sep. 2013…intensive care un oct….ivig caused severe kudney failure…now on dialysus…mestinon helped tempirarily..steroids cause bad side effects…high blood sugar