A little history...
For those who have been following me for a while now, you know what a struggle it’s been to get someone to listen to me. Even before my medical retirement, my seizures and other health issues were always chalked up to being psychological in nature. Why? Because I also have a diagnosis of PTSD from being assaulted. What this has meant for me, is for the last 5 years, I’ve had to fight for my voice to be heard. To prove my declining health wasn’t a result of the PTSD. I had to do the research the doctors didn’t feel inclined to do. And I had to seek out treatments to keep myself somewhat stable or take a fist full of pills prescribed by the VA. Finally, after fighting for the last 5 years (but being told it was all in my head for nearly 8 years), I have a diagnosis that explains a good chunk of my symptoms. Below, is a quick little timeline of symptom development.
- 2010 – Seizures started while deployed to Iraq – “it’s all in my head/anxiety/PTSD related”
- Developed an infection while deployed – later diagnosed as MRSA. Now a carrier
- Brain fog, memory issues, and “tremors” developed
- 2011 – Medically retired out of the Army. Rated at 100% service connected disability through the VA
- Significant cognitive decline noted and confirmed with testing – yup, still all in my head…
- Pineal cyst identified as “incidental finding” during brain scans to rule out multiple sclerosis
- 2012 – Leg weakness started. Weakness improved with rest, got worse with activity. Could no longer do the stairs on a regular basis
- 2013 – Severe fatigue set in. Started noticing intolerance to heat… 3 years after seizure started… still all in my head. No diagnosis
- Got married!
- 2014 – Tremors officially diagnosed as cervical dystonia. But everything else is all in my head because traditional pharmaceutical medications aren’t helping as much as they “should”
- Started having intermittent choking episodes
- Diagnosed with OAB
- 2016 – Right eye droop emerged – aka ptosis. I was told I was “managing my symptoms well enough on my own” and there was nothing the neuro I was seeing could do for me. Eye droop was dismissed. Everything is still “all in my head”
- Heat intolerance is getting worse. Ptosis and choking episodes happening on a more regular basis
- Through my own research, I begin to suspect Myasthenia Gravis as the primary culprit
- 2017 – Begin to get headaches every morning and feeling short of breath – like an elephant sitting on my chest. Go to ER many times for difficulty breathing. Eye droop happening more frequently. Ptosis happening when fatigued or too hot. Voice gets hoarse when I get over heated. Still being told it’s all in my head, aka conversion disorder
- Given a “working diagnosis” by optometrist of Myasthenia Gravis. Sent to Boston.
- Hospitalized for severe choking episodes that are not resolving. Not able to eat solid foods for more than a week. Progressing to even having difficulty with liquids
- Regular neurologist FINALLY agrees to do a drug trial for a medicine known to help alleviate MG symptoms.
- 2018 – January 10 – FINALLY given a CONFIRMED diagnosis of myasthenia gravis. Acknowledged that it is NOT conversion disorder/all in my head
And my story, unfortunately, is not abnormal. I have seronegative myasthenia gravis. What this means, is that I currently do NOT test positive (or least positive enough) for any of the KNOWN antibodies with the blood tests available. At this time, the VA only tests for the ACHR antibodies. There are 4 known antibodies – two of which were only recently discovered. The two commonly tested ones are ACHR and MUSK. The other two are AGRIN and LRP4. The last two aren’t even offered as normal tests right now – you have to send out for those tests and most insurances won’t cover it…
There are many stories like mine on the road to diagnosis.
What is Myasthenia Gravis
Myasthenia gravis (pronounced My-as-theen-ee-a grav-us) comes from the Greek and Latin words meaning “grave muscular weakness.” http://www.myasthenia.org/WhatisMG.aspx
What it does, is that it affects the junction where the nerve and the muscle meet. There’s a little space there. MG makes it so that the receptors don’t interpret/receive the messages right. There are several known antibodies that cause this communication degradation, and still more likely to be discovered. The page linked above has a much more in depth explanation of what MG does for those who are interested.
There are days I need my wheelchair. But recently, as a result of a diagnosis and proper treatment (FINALLY), I am having to use my wheelchair less and less and rely on my cane or forearm crutches.
There is no cure for MG. And it is often referred to as the “snowflake disease” because each person presents a little differently – we are all unique. Some combinations of meds work well for one person and not at all in another. Treatments can be as simple as a single medication (I take pyridostigmine bromide – generic mestinon, and that’s it for right now.. and that seems to be managing well) and others need a much higher dose of that same medication, plus immunosuppressants, steroids, and many end up needing monthly infusions.
Common symptoms include
- A drooping eyelid
- Blurred or double vision
- Slurred speech
- Difficulty chewing and swallowing
- Weakness in the arms and legs
- Chronic muscle fatigue
- Difficulty breathing
So NOW WHAT? Well, now that I have a name for the monster that’s been causing all the headaches, it’s easier to fight it. My suspected triggers for what makes certain symptoms worse have been confirmed. I know that what I’ve been doing to manage my health is on the right track and I can keep going down this path. It also means, that now that I’m on a treatment plan that seems to be helping and working, I can push a little harder. I can push the boundaries I once kept my body to in order to determine just how much this medicine is helping me. Any information on what I can do helps inform my neurologist on what future treatment protocols we implement. All data is good data. As a matter of fact – I’m’ training for my first ever 5k! I won’t be running it, but biking it with a hand cycle I am being awarded. You can read more about how that came to be HERE. Before getting the confirmed diagnosis and starting the proper treatment, I never would have been able to even think about doing a 5K.
The biggest weight that’s been lifted off my shoulders with this diagnosis, is that I no longer feel like I have to PROVE to my doctors that there really is something wrong. That the breathing difficulties aren’t because of anxiety attacks. The leg weakness isn’t because I’m lazy. I have been validated. Now I can spend all that time I was using to research this disease so I could be my own advocate I can spend in the studio.
And THAT my friends, is AMAZING.