Navigating the VA healthcare system with presumptive conditions
My Top 3 tips for fellow veterans with chronic illnesses like MG
“A service-connected condition means an illness or injury that was caused by — or got worse because of — your active military service.”
Did you know that the U.S. Department of Veterans Affairs, also known as the VA, considers myasthenia gravis (MG) a presumptive service-connected condition for veterans? Presumptive conditions include certain chronic illnesses that start within a year of discharge from active military service. It’s not necessary to prove to the VA that your service caused the illness, but you must meet several requirements for the condition to be considered presumptive.
I’m lucky enough to have a few of these presumptive conditions: MG, fibromyalgia, breathing difficulties, post-traumatic stress disorder, and a skin condition. Many are related to my exposure to open burn pits during my deployment to Iraq. Conditions like MG, however, are often difficult to diagnose because they’re comprised of a wide constellation of symptoms and issues. It can be challenging to find a doctor who’s willing and able to put all the pieces together.
To help all my fellow veterans, I thought I’d go into a little more detail about my diagnostic journey in the VA system and my recommendations for how to navigate the red tape.
Step 1: Don’t wait
Waiting to seek help and treatment can cause you to miss out on qualifying for benefits at the VA. I know, I know … the VA has a bad rap. But I can assure you it’s not that way at all offices.
I’ve had some amazing (and not-so-amazing) doctors throughout my time in various VA systems. The important thing is to seek treatment and fight to have a care team that listens to you. If you’re uncomfortable with the care you’re receiving at your local VA, don’t be afraid to use a patient advocate to get a referral for specialty care in the community.
I had to use a patient advocate when I lived in Maine to see a neurologist who specialized in treating MG and was seronegative-friendly.
Step 2: Don’t hide a thing
It’s easy to act strong and sweep certain things under the rug. For example, I didn’t tell my care team about how bad my tinnitus (ringing in the ear) actually was until almost a decade after my medical retirement. Why? Because I was too busy trying to figure out everything else. The problem with delaying this way is that it becomes difficult to pinpoint whether a particular symptom is connected to any other chronic health issues you may be experiencing.
It may feel like you’re being a whine a**, but it’s important to get to the bottom of what’s wrong and to have it documented in your medical chart. This documentation will play a big role in helping you prove when a chronic health issue began.
It took seven years of me advocating for my care team to find answers before all the puzzle pieces came together in the form of my myasthenia gravis diagnosis. While MG is granted service connection under Title 38, Code of Federal Regulations 3.309a, it’s not actually documented as service-connected in my chart.
I could fight for this designataion to be updated, but it would require my current care team to write a nexus letter (a letter explaining why my chart needs to be amended), and it may or may not require me to go through a new claim exam. Frankly, I just don’t want to deal with the headache. As I mentioned earlier, I have enough other documented issues that making MG officially service-connected wouldn’t affect the benefits I receive from the VA.
Step 3: Don’t stop being a squeaky wheel until you’re satisfied
When I began using the VA for healthcare, I was scared because there was a lot wrong with me and I had no answers. I took the medications I was prescribed and wasn’t vocal about whether I agreed with the assessment. It wasn’t until I was sick and tired of being sick and tired and taking 30 pills a day before I was 30 years old that I became a squeaky wheel.
I advocated for my overall well-being. I wanted to live, not just survive. I had frank and open discussions with my care team. I became an advocate, which in turn empowered my husband to also be an advocate for me.
Don’t stop fighting for the life you want. Find ways to have uncomfortable conversations respectfully. Be willing to meet your care team halfway to explore those differential diagnoses. But don’t stop being an advocate.
Navigating the VA healthcare system can be tricky, but without it I wouldn’t be striving to live my best life.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
About the Author
Glen Ackermann
I have been out of the service for 35 years. Men aren't typically diagnosed until age 50 or later (age 61 when diagnosed). I don't suppose the VA will cover my medical care.
Vince O'Rourke
Thanks for the post. Had to go through the VA process as well. MG was originally not recognized by the VA even after a growing list of autoimmune conditions after coming back from Iraq. After a couple months of suffering and luckily getting better from MG, I started an appeal. The VA had made some mistakes in the consideration of the evidence, which served as the basis for the appeal. Veterans at transition, especially young ones, just want to get out and rush the transition often not made easy by circumstances of leadership, bureaucracy and one size fits all guidance. Some Veterans Service Organizations are able to help but limited. That being said I am privileged to have access to great care through DHA and the VA.
Euen Eugene Jenkins
My mg was found Oct 2012. The E R Dr. figured it out in about 2 hours after a lot of blood work. I have been to 3 V.A doctors with the information and they all agree. I was assigned to a Dr. at the V A that has a lot of information about MG and takes care of all MG patents. Yes I was stationed at Camp Lejeune N.C. 1974 and it is on my records. So far the V A is been great to me in St Louis Mo. Thanks
Mike Jewell
Thank you for highlighting this issue! I am a medically retired Air Force veteran diagnosed with Generalized Myasthenia Gravis in early 1992 after a year-long journey with countless medical specialists to determine my specific malady. After my diagnosis in January, I was flown to San Antonio, Texas for a Thymectomy performed at Wilford Hall Medical Center. Shortly after, I was medically retired and left to figure things out on my own. In 1992 there was no Transition Assistance Program for members retiring or discharging from the military. Thankfully, I met a service officer from the DAV who helped me understand my VA benefits! I am forever indebted to the DAV and that gentleman!
Heather Carrier
I have followed this blog for awhile! I am an OIF/OEF vet with PTSD and MG a few more items! I got word today that my appeal with the VA granted my Service Connection for MG!