Staying Healthy At Work
It can be hard to know when to tell your boss and coworkers of your diagnosis. Your doctor or others you know through an MG support group may be able to offer suggestions for how to approach the subject of accommodations. It will probably help to reassure your boss that most accommodations are no- or low-cost.
Some accommodations you may want to discuss with your company include:1
- A guaranteed parking space near the building
- Building breaks into your work day
- Reassigning or reducing lifting duties
- Allowing you to work from home
- Flexible deadlines to minimize stress
- Ensuring your workplace is cool enough
- Assistive devices such as a cart, voice-to-text software, grip handles, and more
It may then help to create a support plan with your boss or human resources. A support plan should cover:1
- Preventive measures to keep you healthy at work
- Reasonable accommodations to your work environment and schedule
- When to get emergency help
- Key contacts
Bipoc Communities And Myasthenia Gravis
Research on myasthenia gravis in BIPOC communities is lacking. However, one small study found that the condition seems to develop earlier or at a younger age in African Americans than in white Americans.
That same study also suggests that the incidence of AChR-Ab-positive myasthenia gravis is similar in white Americans and African Americans , while MuSK-antibody positive myasthenia gravis is more common among African Americans than white Americans .
However, a second small study that included Hispanic and Asian participants in addition to white and African American subjects found MuSK-antibody positive myasthenia gravis only among Hispanic and Asian subjects, not in any of the white or African American subjects.
Should I Invest My Savings Or Keep Them Instantly Available In Case Of An Emergency
Myasthenia gravis can be difficult to predict, so having savings available to you in case you are unable to work or have extra medical bills may be helpful. However, you may want to consider investment opportunities, like lifecycle funds, bonds or stocks.1 Learn about the different investment choices at the U.S. Bureau of Labor Statistics website and speak to a financial professional about what is best for you.
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What Is Myasthenia Gravis
MG is considered an autoimmune disease that affects the neuromuscular system. The disease causes muscle weakness after muscles are used for a while. With rest, the muscles will recuperate and become usable again. The most significant problem with MG is that it can affect muscles related to breathing, leading to dangerous situations where the individual must be taken to the hospital for breathing assistance.
Some symptoms of MG include:
- Loss of control of the eyes
- Loss of control of the eyelids
- Issues making expressions with the face
- Neck weakness
- Problems breathing
The severity of MG can vary from person to person. Some people with MG are able to control it with the right medication. Others are not as responsive to medication and may have much more severe symptoms.
Should I Plan For Or Invest In Early Retirement
You can choose to start receiving Social Security retirement benefits as early as age 62 at a reduced amount.5 Your company retirement plan may also offer early retirement options, and some plans may waive the penalty for early retirement if its due to a medical condition like MG. Deciding when to start receiving retirement benefits is a personal decision. Make sure to speak with a financial professional about what is best for you or go to the Social Security Administration website to learn more.
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The Quantitative Myasthenia Gravis Score
The QMGS also has shown to be responsive to change in several clinical trials. In a randomized study of intravenous immunoglobulin and in a cyclosporine trial, treated patients had a statistically significant improvement in the QMGS compared with a placebo group. Based on the mean change in the cyclosporine trial and the reliability a studies, a change of greater than 3.5 points has been typically considered as significant., Using the data from the IVIG versus placebo study, the MID with mild to moderate MG was calculated to be 2 points, although patients with higher baseline values had a higher MID of 3 points, which is a well-described phenomenon. Additionally, the performance of the individual items of the QMGS was studied, with evidence of floor effecta high proportion of patients scoring 0 at baselineon grip strength, dysarthria, swallowing, and percent forced vital capacity. The items that changed the most after treatment were ptosis, and arm, leg, and neck endurance. The main drawbacks of the QMGS are in terms of feasibility and ease of use, because it requires a dynamometer and spirometer and can take up to 25 minutes to complete. Therefore, it is mostly used in research rather than routine clinical assessments.
Know The Insurance Company Will Want Proof Of Your Diagnosis
Myasthenia gravis can mimic symptoms seen in a variety of other disorders, such as muscular dystrophy, ALS, stroke, multiple sclerosis, Gillian-Barre syndrome, and tick paralysis. To complicate things further, the symptoms tend to fluctuate over time. Many individuals see multiple specialists and undergo exclusionary tests to rule-out other possible causes. Thus, it’s not uncommon for myasthenia gravis to go undiagnosed for months. In fact, in some cases, it may take years for a proper diagnosis.
The insurance company will require objective proof of diagnosis. This may include:
- Neurological examinations
- Edrophonium test
- Blood analysis and
- Pulmonary function tests.
Your doctor may not order all of these tests. But, the insurance company will want to see that you underwent all appropriate testing recommended by your doctor. The insurance company will also want to see that you are consistently under the care of appropriate physicians, such as a neurologist, and that you are compliant with your doctors treatment plan.
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What Research Is Being Done
The mission of the National Institute of Neurological Disorders and Stroke is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease. The NINDS is a component of the National Institutes of Health , the leading supporter of biomedical research in the world.
Although there is no cure for myasthenia gravis, management of the disorder has improved over the past 30 years. There is a greater understanding about the causes, structure and function of the neuromuscular junction, the fundamental aspects of the thymus gland and of autoimmunity. Technological advances have led to more timely and accurate diagnosis of myasthenia gravis and new and enhanced therapies have improved treatment options. Researchers are working to develop better medications, identify new ways to diagnose and treat individuals, and improve treatment options.
Medication
Some people with myasthenia gravis do not respond favorably to available treatment options, which usually include long-term suppression of the immune system. New drugs are being tested, either alone or in combination with existing drug therapies, to see if they are more effective in targeting the causes of the disease.
Diagnostics and biomarkers
Assistive technologies, such as magnetic devices, may also help people with myasthenia gravis to control some symptoms of the disorder.
Meeting The Listing For Myasthenia Gravis
Myasthenia gravis has its own disability listing in the Social Security listing of impairments that may qualify for disability. To prove you meet the requirements of the MG listing, listing 11.12, you must have a diagnosis of myasthenia gravis and prove that you have one of the following:
- The inability to control the movement of at least two limbs , resulting in extreme difficulty in one of the following abilities:
- to balance while standing or walking
- to stand up from a seated position, or
- to use your arms.
- Weakness in the bulbar muscles that has caused either:
- a myasthenic crisis that required mechanical ventilation, or
- the need for supplemental nutrition, either via a gastric feeding tube or intravenously, via a central venous catheter.
- A “” limitation in physical functioning and a “” limitation in mental functioning.
- Having a marked limitation in physical functioning means being seriously limited in the ability to independently start, sustain, or finish any work-related activities. Work-related activities include the ability to use your arms and hands and the ability to balance, stand, and walk.
- Having a marked limitation in mental functioning means being seriously limited in one or more of the following areas:
- understanding, remembering, or applying information
- interacting with others
- concentrating, persisting at tasks, or maintaining pace in performing tasks , and/or
- adapting or managing oneself .
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Myasthenia Gravis Condition And Symptoms
Myasthenia gravis is a neuromuscular disorder that causes a weakening of the voluntary skeletal muscles in the body. These muscles are responsible for creating conscious movement. For example, when you want to move your leg, your voluntary muscles create the movements that achieve the result you intended. When an individual suffers from myasthenia gravis, these muscles suffer from weakness because the nerves that activate the muscles are not able to function properly.
In a case of myasthenia gravis, the reason that the nerves do not function properly is due to the fact that the individual’s immune cells attack the healthy cells of the body. This causes the body to create antibodies that block the muscle cells from receiving the messages that are sent by the nerve cells. The symptoms caused by this are increased with physical activity. However, when an individual gets enough rest, the symptoms of the condition will improve.
The specific symptoms of myasthenia gravis can vary from individual to individual. Common symptoms include: trouble breathing, difficulty swallowing and chewing, frequent gagging, difficulty performing physical tasks, drooping head, facial paralysis, chronic fatigue, hoarseness, double vision and eyelid drooping.
Qualifying For Disability Benefits Based On An Immune System Disorder
Determining whether or not you qualify for disability benefits based on an immune system disorder will depend primarily on the specific diagnosis and condition that is hindering your ability to maintain employment. As a general rule, the Social Security Administration evaluates disability benefit applications predicated on an immune system disorder by referring to the standards set forth under Listing 14.00 of the Bluebook. The SSAs Blue Book summarizes the different types of physical and mental impairments that are generally accepted as disabling. SSA relies on the Blue Book to determine whether an applicants disability will prevent them from working.
Listing 14.00 details an array of immune system disorders that are generally deemed eligible for disability benefits. Here is a sampling of some of the immune disorders referenced in Listing 14.00 :
- Lupus
- Connective Tissue Disease
- Inflammatory Arthritis
If you are 50 years of age or older, the Medical Vocational Guidelines may be helpful in assessing your ability to maintain employment. For an application who is 50 years of age or older whose symptoms have adversely impacted their ability to walk, stand and carry, may be deemed disabled based on Grids guidelines.
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Measures Of Disability And Health
There is one measure specifically aimed at measuring disability in MG using the ICF framework, the MG-DIS. Additionally, there are 2 disease-specific measures of HRQoL: the MG-QOL 60, a 60-item measure, and the MG-QOL 15, which derives from the 60 item questionnaire and that has been recently modified . summarizes these measures.
Myasthenia Gravis And Covid
In August 2020, researchers in Italy described the development of myasthenia gravis in three adults with severe COVID-19 in an article published in the journal Annals of Internal Medicine.
The three adults, who ranged in age from 64 to 71, developed their myasthenia gravis symptoms five to seven days after fever related to the new coronavirus first appeared. None of the three had prior history of neurologic or autoimmune disorders.
However, all three were positive for antibodies that block acetylcholine. These antibodies, which have been shown to cause myasthenia gravis, may have been activated by COVID-19, the researchers say.
One of the three developed respiratory failure either as a result of the virus or myasthenia gravis.
Although the potential links between COVID-19 and myasthenia gravis are concerning, as infections continue to rise globally, its important to note that these are the only three cases to have been reported so far.
Still, if you have myasthenia gravis, it may place you at increased risk for serious illness from COVID-19. Talk to your doctor about steps you can take to minimize your risk.
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The Process For Applying For Ssa Disability Benefits For Myasthenia Gravis
The process for gaining SSA disability benefits for Myasthenia Gravis takes place in stages. Each stage must be passed before the next will be examined. If at any point during this process the SSA determines that the claimant doesn’t meet the criteria, the application for disability benefits will be denied. The steps for approval are as follows:
How Is A Myasthenia Gravis Crisis Treated
Contact your doctor and go to the hospital!!
If you get to the hospital early enough they will just monitor your breathing and assess the steps to bring you out of the crisis. Most often respiratory failure will require intubation and mechanical ventilation.
As scary as the thought of being on a ventilator is, the use of the machine has improved the mortality rate associated with myasthenic crisis.
In addition, they often provide IVIg or plasma exchange during your hospital visit.
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Disabling Symptoms Of Myasthenia Gravis
The first signs of myasthenia gravis are usually slurred speech, problems swallowing, and weakness of the muscles around the eyes . Weakness in facial muscles can cause loss of eye control and eyelid movement, drooping of one eye, double vision, decreased ability to make facial expressions, and problems talking and chewing properly . Muscle weakness in the neck and chest can result in difficulty swallowing, breathing, speaking, and neck weakness. Other parts of the body that usually experience weakness include arms, hands, fingers, and legs.
In some instances, those with MG can experience “myasthenic crisis.” This occurs when the respiratory muscles become paralyzed, requiring individuals to be put on breathing machines.
With myasthenia gravis, patients can often do some work, but they need frequent rest breaks due to their easy fatigability. If you can document that your breaks would decrease your productivity by 20%, Social Secuirty should grant you disability benefits.
Signs And Symptoms Of Myasthenia Gravis
The muscle weakness caused by myasthenia gravis is typically at its worst after periods of physical activity and gets better following rest.
However, the muscles that control eye and eyelid movement, facial expressions, chewing, talking, and swallowing are often affected, making certain everyday activities challenging.
The onset of myasthenia gravis can be sudden in some people, and the degree of muscle weakness varies from person to person.
The condition can be challenging to diagnose because its symptoms mirror those of several other conditions, including generalized fatigue, amyotrophic lateral sclerosis , and botulism.
Although symptoms vary slightly from one person to the next, most people with myasthenia gravis will experience at least some of the following:
- Weakness of the arms, hands, fingers, legs, and neck
- Weakness of the eye muscles
- Drooping of one or both eyelids
- Blurred or double vision
- Alterations in facial expressions
- Extreme heat
- Medication such as beta-blockers, quinidine gluconate, quinidine sulfate, quinine, phenytoin, some anesthetics, and some antibiotics
Even though some types of medication have been shown to worsen the symptoms of myasthenia gravis, they may still be used if its more important to treat another underlying health condition, such as an infection or high blood pressure.
If drug treatment for another condition is worsening your myasthenia gravis, ask your doctor if there are other options.
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Consider Creating A Timeline Of Your Disability
Because myasthenia gravis symptoms appear slowly over time, some individuals can continue working until the disease progresses further. If this is true in your case, the insurance company will want to know why you could work one day, but not the next. To answer this question, it may be helpful to compile a timeline of your symptoms, diagnosis, treatment, and resulting disability.
Having this timeline will be extremely helpful for several reasons. First, the timeline can help you when answering the insurance companys questions about the progression of your symptoms. Second, the timeline will help to ensure that your responses and explanations are consistent. Finally, timeline may also serve as a helpful reference for your legal team.
When You Have Myasthenia Gravis Planning For Financial Circumstances May Be Beneficial And There Are Professionals Who May Be Able To Help You
If you or a loved one are diagnosed with myasthenia gravis , there may be many financial considerations to think about. If you feel like you could use some guidance, you may decide to hire a financial professional. They might be able to help determine if you have some options you hadnt already thought about.
If you do decide to speak with a financial professional, knowing some of the right questions to ask them can be a great place to start. Remember, before talking to a financial professional, be sure to ask how they charge for their services and what you may have to pay for an initial consult.
This article and the following points to think about are not financial advice. Only a financial professional who understands your unique financial circumstances will be able to provide you with knowledgeable recommendations.
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