I am starting this blog to inform readers about the life of a fairly fit person with Myasthenia Gravis. I want to inform people of the disorder, the types of medications, procedures, options, and daily struggles one may deal with as well as the amazing things that you can still do with this disorder. Though it is a disorder it is not a death sentence. Some people start blogs and wonder if others will read it and people may never read mine and that is ok. But I hope that someone reaches out to mine to learn about the different things I have been through. I am no expert but I am very acute to my body, and it doesn’t hurt that I already hold degrees in the health field so luckily I can digest and regurgitate in simpler terms what doctors tell me. I have been battling MG for 2 years now I was officially diagnosed in October 2013 two weeks before my wedding but the symptoms started the summer before and hit me like a freight train. I was told that usually it takes a long time to diagnose someone but once I finally came into the neurologist’s office it took less than 3 week’s time for him to make a prognosis he was just waiting on the blood tests to confirm what he already knew. Before that day, I had never even heard of the disorder. It doesn’t stop me from doing my usual routine, I just have to remind myself I am not superwoman, LOL. Sometimes when you research a disorder all you see is the bad and I hope I can show people the good as well. I still teach fitness classes like bootcamp, kickbox, and pilates. I still run warrior dashes and 5ks, and I still play paintball and have an occasional drink. Life does not have to stop.
Backstory I am a health fitness specialist and personal trainer I was working out doing some intense new training at a new fitness center and during this 2 week training I SUDDENLY could not do a simple 20lb dumbbell chest press on my right arm. The dumbbell cam crashing into my right breast. It happened again a few days later. I noticed weakness in other areas of my body as well but my arms and hands were the worst and I could barely breathe when I ran. I had also been suffering a 60 day migraine. Having a history of migraines I was concerned because my longest migraine was usually 4-6 days without ebbing so after day 10 I went to the doctor. He tried a new migraine medication. It did not work. He then referred me to a neurologist around day 30. The neurologist saw me and prescribed me a migraine med and sent me on my way. Then less than 2 weeks later I called back and told him I had double vision in rush hour traffic, more weakness, and slurred speech. He called me in immediately (within 60 minutes). When he saw me he asked me to put an ice pack on my right eye for a few minutes and then take it off. Apparently I also had a drooping eye lid and did not notice as well. He then prescribed me pyridostigmine. He then sent me to get blood tests which were sent to the Mayoclinic in a round a bout way with many other tests I was confirmed to have MG. I did electric fatigue tests called EMG and repetitive nerve stimulation tests.
I progressively got worse over the next few weeks until my body finally hit bottom with the disorder. I was hospitalized right after my honeymoon. I was terribly weak during our honeymoon and going through respiratory failure during my honeymoon. I was then put on the the rest of my ‘regimen” of meds as I call them, lol. Prednisone, cell cept, mestinon (time release- over night because I am weakest in the morning and this helps me wake up more refreshed and able to function in the night if I had to) I also take topiramate daily as migraine prevention. Finally I also get Plasmapheresis which is a also known as plasma exchange as an outpatient process as needed. Right now its every 6 weeks and I am trying to lengthen it to 3 months so we can try for a baby. Plasmapheresis is one of the most helpful treatments for me right now and works really well with my insurance I get 3 rounds (Monday, Thursday, Monday in a 7 day period every 6 weeks) through my antecubital (front of the elbow) instead of a port or central line.
I have had a few strange set backs and I learn something new often but you can still accomplish many things.