Mast cell activation syndrome (commonly known as “MCAS”) is a chronic medical condition that can lead to long term disability. MCAS is caused by your body’s mast cells overproducing chemicals called “mediators.” The mast cell mediators induce symptoms of an allergic reaction, such as skin hives, low/high blood pressure, wheezing, and in severe cases, anaphylactic shock. These MCAS reactions are often triggered by exposure to environmental factors.
MCAS is not a well understood condition in the medical community, and while there are various treatment options, there is currently no cure. If you have MCAS, you may experience symptoms with enough severity and frequency to interfere with your ability to work.
You may be wondering: Can you file for long term disability due to your MCAS? What will you need to have a successful MCAS long term disability claim?
Below we’ll answer those questions and more.
Can I Get Long Term Disability Due To MCAS?
Yes, it is possible to receive long term disability benefits for Mast Cell Activation Syndrome (“MCAS”). The physical symptoms (hives, low/high blood pressure, abdominal pain, fatigue, etc.) and cognitive symptoms (brain fog, anxiety, etc.) of MCAS can prevent some sufferers from working. For some, MCAS symptoms can be minimized with treatment and limiting exposure to triggers. However, if your MCAS flares are unpredictable and cannot be controlled, you may find yourself no longer able to continue working.
Like any other medical condition, whether or not you will be approved for disability benefits depends on the severity and frequency of your MCAS symptoms, as well as how they interfere with your ability to work.
Disabling Symptoms of MCAS
MCAS symptoms often present as similar to allergic reactions. One of the most serious symptoms of MCAS is anaphylaxis— a severe allergic reaction that, if left untreated, can close your airway and lead to shock and/or loss of consciousness.
The symptoms for MCAS can affect several different body systems, including:
- Respiratory (coughing; wheezing; chest tightness; anaphylaxis)
- Dermatologic (skin itchiness; flushing; rashes; hives; swelling)
- Cardiovascular (irregular blood pressure; lightheadedness; dizziness; rapid heart rate)
- ENT (dry/itchy eyes; light sensitivity; nose and throat congestion)
- Gastrointestinal (recurrent abdominal pain; irritable bowel; nausea; acid reflux; gastroparesis)
- Nervous system (brain fog; poor short-term memory; anxiety; fatigue; headaches)
MCAS, EDS and POTS
MCAS commonly presents as a co-morbidity with Ehlers-Danlos Syndrome (“EDS”) and/or Postural orthostatic tachycardia syndrome (“POTS”). If you are diagnosed with one of these syndromes, you may very well have one—or both—of the others.
Each of these syndromes is relatively new to the medical community, and there is no clear scientific explanation for why these diagnoses tend to overlap in patients. Some researchers believe EDS can trigger MCAS due to the mast cells present in connective tissue. Alternatively, some believe MCAS can cause EDS and POTS.
Regardless of the scientific reasoning behind the relationship between the three syndromes, many with MCAS share the same autonomic dysfunction symptoms caused by POTS and EDS. If you have an MCAS diagnosis, it is worth discussing with your doctor whether you may have POTS and/or EDS as well.
When filing for long term disability, the more clarity you have of your own diagnoses, the better your chances are of filing a successful claim.
How Do I Prove Long Term Disability For MCAS?
In order to get approved for disability benefits, your disability insurer will require explanation and proof of how your MCAS symptoms prevent you from working.
MCAS can be particularly challenging compared to other conditions. MCAS flares can be erratic and unpredictable, and the severity of your symptoms may fluctuate day-to-day. One day you feel relatively okay; the next, a flare leaves you fatigued, miserable, and dealing with severe discomfort. Or, if a flare is bad enough, you may wind up in the hospital.
How do you explain this convincingly to a disability insurer that is looking for any justification to deny your claim?
Below are ways to gather strong evidence of your MCAS symptoms.
Getting A Diagnosis of MCAS
Having a definitive diagnosis of MCAS from a doctor well-versed in the condition will help bolster your disability claim.
There is not a singular test that can provide a definitive MCAS diagnosis. Rather, your doctor will make a diagnosis by considering the following criteria:
- You have symptoms commonly found in MCAS patients. Your doctor will evaluate what symptoms you are experiencing, and whether they are associated with MCAS. An in-person examination of your skin and a reading of your blood pressure, for example, will give your doctor an idea of whether you may have MCAS.
- You respond to MCAS treatment. MCAS is commonly treated with antihistamines, mast cell stabilizers, anti-leukotrienes, and other medications. If your doctor prescribes one of these medications and it helps to curtail your symptoms, this substantiates an MCAS diagnosis.
- Your test results indicate MCAS. Blood and urine tests can show signs of MCAS. Testing can show mast cell “mediators” (chemicals released by mast cells) as higher than normal (especially if tested during a flare). MCAS patients often have elevated levels of serum tryptase, which can be determined via blood test. Urine tests can reveal abnormal histamine and prostaglandins levels, common in those with MCAS.
- Other diagnoses are ruled out. As mentioned earlier in this article, MCAS often overlaps with other diagnoses such as POTS and EDS. Your doctor will consider whether another condition is responsible for your symptoms via examination or further testing.
If, once the diagnostic criteria is weighed, your symptoms and test results indicate MCAS, your doctor will give you an official MCAS diagnosis. If testing is more ambiguous, your doctor may label your condition as “suspected MCAS.”
It’s important that your doctor is thorough with their evaluation of your MCAS. The more evidence to support your MCAS diagnosis as legitimate, the better for your long term disability claim.
Documenting Your MCAS Symptoms
For those with MCAS, documenting symptoms can be especially challenging given that the syndrome is not well understood by the medical community. Additionally, many of the symptoms can be “subjective”—meaning, they cannot be objectively measured in medical tests.
For example, your MCAS may cause episodes of brain fog and fatigue where you are unable to concentrate well enough to perform your work duties. These symptoms are very real, but unfortunately difficult to prove to your long term disability insurer. Long term disability insurers are typically skeptical of "subjective” or self-reported symptoms.
Here are a few ways to document your MCAS symptoms:
- Start a paper trail with your doctor(s). Objective medical evidence is always one of the strongest components of any long term disability claim. Every time you treat with your doctor, they record a note on what transpired at that visit. Make sure to explain all of your symptoms, both physical and cognitive, at each doctor visit. If you have any visible signs of MCAS—say, a breakout of hives, intense face flushing, or a rash—your doctor will record this observation in their notes. This will help substantiate your diagnosis and symptoms with your insurer.
- Keep a symptom diary. A “symptom diary” is just a written record of your MCAS symptoms day-to-day. We often recommend our clients keep a symptom diary to explain how they felt, what their symptoms prevented them from doing, how much time they were able to spend sitting/standing/walking, and even include pictures of any visible symptoms (hives, face flushing, etc.). This diary can be submitted to your disability insurer as evidence in support of your MCAS claim.
- Undergo a Functional Capacity Evaluation (“FCE”). A Functional Capacity Evaluation tests your physical function—including your ability to sit, stand, lift, carry, etc. The results from this evaluation can demonstrate in objective measures how your MCAS symptoms impair your ability to work. The FCE is conducted by a medical professional (such as an occupational therapist) and includes embedded “validity tests” that ensure the individual testing is putting forth their best faith effort. Your disability insurer will consider this as supportive evidence of your MCAS.
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Showing How Your MCAS Prevents You from Working in Your Occupation
Most long term disability insurance policies require you to initially prove you cannot work in your own occupation. This means you likely only need to convince your disability insurer that you are disabled from your current job due to MCAS. (If approved, you may need to show you cannot work in any reasonable occupation later down the line.) Of course, you should always check your long term disability policy to see which definition of disability you must meet to receive benefits.
Beyond the medical evidence demonstrating your MCAS, any supportive testing results, and your own documentation (such as a symptom diary), you may consider vocational evidence.
Vocational evidence is evidence tying your MCAS symptoms to your specific occupation, and how those symptoms prevent you from performing your job duties. This evidence can include:
- Your education history
- Training qualifications / any accolades
- Employment history
- Job description
For example, your official job description may detail the physical requirements of your job—such as required travel for business meetings and conferences. You can then argue that your MCAS symptoms limit you from physically performing that job requirement.
You may also consider a vocational assessment. A vocational assessment is an evaluation of your occupational duties and how your MCAS affects your ability to perform them. The assessment is performed by a professional with expert knowledge on the labor market and vocational rehabilitation. The final assessment can serve as further evidence in support of your MCAS disability claim.
How Can A Long Term Disability Attorney Help With An MCAS Disability Claim?
If you are filing a long term disability insurance claim for MCAS, or dealing with a claim denial/termination, an experienced ERISA disability attorney can help.
MCAS is an especially challenging condition to substantiate to your disability insurer. A long term disability attorney can recommend additional testing, work with your doctor to obtain a letter of support, scour your medical records for any red flags, and help produce vocational evidence in support of your MCAS claim.
If you have MCAS and are considering filing for long term disability, talk to the New York disability lawyers at Riemer Hess. We know what evidence LTD insurance companies find persuasive and are prepared to help you make the most convincing claim possible. To arrange for a consultation with lawyers at Riemer Hess, call us at 212-297-0700 or click the button below to schedule a call.