June is Myasthenia Gravis awareness month. For those of us with MG, our awareness is every single day. Below is a summary of my journey so far.
Warning: This is a looooooong post. You should probably order a pizza or pop some popcorn and read this in segments.
MG has been more than a little challenging to deal with on top of all the other autoimmune things I deal with and life in general. Lupus also jumped in recently to join the fun. It brings with it pain that can’t be described. I already had celiac disease, asthma, and hypersomnolence (a nicer way of saying narcolepsy). At this moment, I’m battling a nasty autoimmune-related rash on my right hand and around my right eye. The fun never ends!
Back to this MG character. In 2009/2010, I started having some mild changes in my vision. No one could figure out what was going on. I finally just dismissed it as something brought on by stress. I was back in school after 12 years of being out and while working full time. This crazy feat is not recommended.
Time moved along and in 2011 I started experiencing unusual fatigue. Fatigue that was so bad some days I really couldn’t do much of anything. I just forced my stubborn body to finish homework and go to work every day. Various blood tests to check vitamin, mineral, iron levels, thyroid, kidney, and liver functions, etc. were done repeatedly. Nothing unusual outside of rather high platelets, which have still yet to be figured out. My vision was still being squirrelly. The only thing that finally appeared was a Vitamin D deficiency in early 2012. I was placed on 50,000 IU of D3 for a few weeks. Things improved a bit and I was able to last a bit longer each day without collapsing into bed every evening.
Highlight at this point: I graduated with my Master’s degree at the end of 2011!
To add to my fun, I have a growth on my pineal gland that was discovered in 2006. They say it’s benign. We only watch it to see how it’s doing. Changes in my vision and one really insane headache with numbness on the right side of my face back then led the doctor to do an MRI, which is how the growth was discovered. It was pressing slightly on the optic nerve. Things stabilized over time.
Back to January 2012. My doctor (he wasn’t my doctor back in 2006) ordered an MRI to see if the growth could be affecting my vision again. MRI didn’t reveal anything that would indicate it was the reason behind my vision changes this time.
Fast forward a few weeks and I’m barely able to do my regular 4-mile walks around the lake. I was barely making it one or two miles some days. I was still blaming it on stress.
Fast forward four months to April. While at my agency’s annual conference in San Antonio, I woke up that morning unable to move my arms and legs. I could only turn my head. This episode lasted ~15 minutes. My whole body felt very heavy. No numbness or tingling or anything. I could feel my clothes on my skin and the bed underneath me. I just could not move. I finally regained movement to be able to roll over and sit on the side of the bed. I felt a bit queasy and dizzy and terrified about what I had just experienced. I wanted to blame it on stress and not having eaten much the night before. I had a salad at a restaurant the night before. I remembered having difficulty chewing but managed to finish it. I also found it difficult walking the two blocks back to the hotel. My feet kept dragging and my legs felt so heavy.
I drove (yes, I drove myself) back to Austin that morning thinking I would pop into my primary doctor’s office. I was so tired that I decided to stop at a clinic on the way to my home. They did lab work and examined me. They told me I had mono and that I should have my primary doctor test me for myasthenia gravis. I went home and slept the remainder of the day. The next day I contacted my doctor to tell him what had happened. I saw him the following week. We decided to just let the mono run its course for a few weeks and then see how I felt.
I was set to go to India for a few weeks at the end of May to visit friends and was concerned about traveling since I was still not feeling all that great. I ultimately decided to go anyway. I felt I really just needed rest. If I stayed here, I would not rest. I had to travel to the other side of the world to get a break. I still ended up doing some work for the office while in India! Simply sad.
It was a very challenging trip. I was very weak and struggled through most days, but managed to survive. The last lap before catching my connecting flight in Houston back to Austin could’ve landed me in the ER given how stressed, jet-lagged, and weak I was. I was determined to make it back home. I was only a 45-minute flight away from home!
THE PATH TO DIAGNOSIS
I saw my primary doctor again who ran follow-up blood work. Platelets were the only things out of whack again. I was then referred to a neurologist to be checked for MG.
It would still be another month before the MG diagnosis arrived. During that month, I thought to myself, “Please don’t let it be ALS, MS, or MG” in that order. The results were read off, “You don’t have ALS or MS, but you do have MG.” Hmm, the slightly lesser evil of the three sisters. I was also checked for Lupus at the time since I had an aunt pass away from it the previous year. No signs of it at the time.
TREATMENT AND MISTREATMENT
The treatment regimen started with Mestinon. It helped my eyes, but nothing else. Prednisone, aka Evil P, was then added and so were 65 pounds in 1.5 years. I know people who’ve gained much more. I can only thank the divine for not giving me the insatiable appetite and constant eating that others on prednisone endure. I would’ve gained even more weight!
Prednisone was not kind to me in so many ways. Setting aside the weight issue, it wrecked my bones. I ended up having my first bone break several months after starting it. I fell one day, thanks to MG legs, and broke two toes! Evil P also landed me in the hospital for my first-ever hospital stay since being born 40+ years ago. I had a respiratory infection that wasn’t responding to anything. My diaphragm muscles decided they didn’t want to cooperate AND my asthma was being a queen bitch. It was an awful hospital stay thanks to cluelessness among the staff treating me. I complained so much about it, the hospital ended up comping the $15,000 stay. Oh but wait, I ended up hospitalized again a month later thanks to IVIG treatment for MG that nearly killed me.
Most people get headaches no matter how much water they drink and how many pain meds and allergy meds they take before treatment. I thought it was just a typical post-IVIG headache that most people speak of. No. The pain was so awful and when I say awful, I’m speaking as someone who has dealt with migraines since the age of 15. This headache was the equivalent of 20 migraines rolled into one. My migraine meds didn’t even touch it! This was the hospital stay that has ended my desire to EVER be voluntarily hospitalized again. I will have to be found unconscious or practically dead by someone who will drag me into another hospital! I had a failed spinal tap thanks to incompetent idiots in the ER who kept me in the ER for 8 hours without fluids. The catheter was in my arm all that time. They gave me pain meds to calm the pain and nausea. Nothing given by mouth AND no IV drip. Why? I still don’t know. They finally admitted me just before midnight. When carted to my room I begged the nurse for anything to drink. She was shocked that I wasn’t given liquids in the ER. The doctor’s notes indicated that I could not have anything by mouth after midnight. It was 11:50 p.m. when I begged for liquids. She snuck me some juice and gave me an IV of morphine. Off to lala land I went.
I woke up the next morning after sensing various blood draws throughout the night. Doctor came in and told me I needed a blood transfusion STAT. I’m still waking up and my first thought is WTF? He said my hemoglobin had been steadily dropping since I was first checked in the ER the day before. It was at a critical level and they were concerned I would soon go into shock. Hell, I was in shock at that moment! I signed the consent form and waited for my blood.
As the blood was transfused, my headache started melting away. I told the nurse what was happening. She looked puzzled, but wrote my comment down. A few hours later the doctor came in and I was still headache free. I thought that would be my ticket out of there. No. I had to stay for at least another day. They wanted to figure out if I was bleeding out somewhere. Over the next 24 hours, no blood was found anywhere. They wanted to attempt another spinal tap but I wasn’t having any more of that. I was in a lot of pain from the first failed attempt and I was afraid I’d attempt to stab the doctor with that damn needle if she tried poking me again.
I was released late the next day. I had to see a hematologist to figure out if the IVIG had anything to do with the severely low hemoglobin.
Two weeks later I’m in the hematologist’s office having 16 vials—not those small ones either—of blood drawn. I asked the phlebotomist what the doctor was looking for. Her response, “Everything.” My response, “I hope he finds something.”
His verdict was acute hemolytic anemia caused by the IVIG treatment, the one treatment I was so looking forward to that could possibly give me back my life nearly took it from me. The hematologist walked into the room with my lab results and commented, “No wonder you feel so shitty! I’ve never seen red blood cells look like yours after an IVIG treatment.” He explained that the reaction is rare. There was some sort of antibody reaction. He said that I had very few healthy cells. Most were blistered and had chunks missing from them. He told me there’s no way I should ever have the treatment again. My neurologist agreed. So now what? Continue increasing prednisone or start tapering it and start on low-dose chemo. I ended up having an iron infusion some time later.
Prednisone was obviously not helping me. The neuro decided to start tapering after I was sent for a second opinion of the MG diagnosis. He started thinking maybe there was something he missed. I went to an MG specialist in San Antonio, had another painful EMG and was told the original diagnosis was correct. She also agreed with tapering off prednisone and starting Imuran or Cellcept. My primary neuro and I agreed on Imuran. The first couple of months on Imuran were simply awful! I couldn’t keep anything down. I was still weak (it can take up to a year for it to show signs of working—if it’s going to work). My neuro started me at 50mg a day. Seeing how I responded so negatively, he dropped me to 12.5 mg a day for a while, then 25mg, then finally up to 50mg. The goal is 100mg/day. I’m at 50mg now and tolerating it.
BEHIND THE SCENES
I’m leaving out all the other things that were going on behind the scenes of all this activity like the battle with my employer’s human resources department to be granted FMLA and to use our sick leave pool. I had exhausted all of my vacation time, all of my sick leave, and all comp time earned! My neurologist and supervisor helped me fight that battle. It was won! I had to sneak work home to attempt to stay on schedule. The agency had a no-work-at-home policy. Long story about that and it’s not what you think. That’s another topic for another time.
A relationship ended during this spell. I was having to deal with friends and family who just couldn’t grasp this crazy illness that left me looking relatively okay most of the time, but was so bloody debilitating. The only time people can see the effects of this disease is when my eyes and mouth start drooping or my speech slows down or my feet start dragging. I have no idea how many times people have said things like, “Oh, you just need to rest. I get ‘that way’ when I’m tired then I’m good to go after a good night’s sleep.’” Then there’s the you-need-to-strengthen-your-immune-system comments. If another person says that to me I will most definitely have my first assault charge! My immune system is already too strong. It works too well! It’s killing all the crap it’s supposed to AND it’s trying to kill me! It needs to chill out, not be revved up. That’s where immune suppressants like prednisone, Imuran, Cellcept, and other immune suppressants come into play.
LEAP OF FAITH
I have very little patience these days for a lot of things. In February of this year I made up my mind to give up one of my battles—the one with my employer. I reached a point where I knew that if I stayed there any longer, I would not improve and would continue my downward spiral. The place had taken its emotional toll on me. (Check out many of my previous posts about the work B.S.) I felt guilty every day that I wasn’t there. I grew weary of whispers and odd looks from certain coworkers who obviously thought I was faking all this drama. I’m very likely the least dramatic person you all could ever meet. Many of them will never know how much I actually did for the agency because a lot of the work was behind the scenes. I truly don’t care anymore what any of them think. I have zero regrets about leaving the place to save my life.
Although I left with only $10K in my retirement to withdraw and absolutely nothing left in savings thanks to all the medical nonsense, I have felt liberated. Yes, it was a leap of faith. I’ve refused to live with anyone else. I’m still surviving on my own. I’m making a go at starting a business in my career field. Things are slowly falling into place. Divine guidance has been placing certain people in my path to encourage my wild endeavor. I have one client lined up, another one pending, and another one who might come into play in a few months.
THE COST OF THE DISEASE
Many MGers have to leave their jobs/careers behind due to the unpredictable nature of this disease. One minute we look and feel ok, and out of the blue, we’re floored by extreme, sometimes completely debilitating weakness. Stress, heat, humidity, certain medicines, etc. can bring on a terrible flare in minutes. Sometimes we can recover quickly, as in a couple of hours. Other times we’re laid out for a few days, or, even worse, we can end up on a ventilator in the hospital. Sadly, this disease has taken many lives. It’s not a mind over matter deal. It all depends on the meds we’re on, how our muscles decide their recovery speed, and how much stress we continue or not continue to add to our weakened muscles.
Some MGers are fortunate and have in-home help from family, friends, or hired caretakers. Many of us do not. Chores still have to get done inside and outside the home. If you’re on a limited income, you can’t just hire someone to come in and do the dirty work for you. You have to pace yourself to get everything done. Things that used to take a few hours on a Saturday now take a few hours throughout the week to accomplish. Frustrating? Yes, very! I’ve had to get used to things not being as tidy as they used to be. I’m very OCD. Seeing things pile up and seeing things placed where they wouldn’t normally be placed just hurts my soul! I’m slowly accepting it. Slooooowly.
It’s difficult to explain to friends and family that it’s nigh impossible to make advanced plans for get-togethers and such. There’s so much guilt many of us feel when we make plans and have to bail out at the last minute simply because our muscles are being difficult. We’re not making excuses. I for one do not want to push myself anymore these days to please others. If people think ill of me, they’ll think ill of me. They can kiss my weak-muscled arse! I have zero time for dealing with such non-understanding people.
So many people are dealing with all sorts of crazy issues —health and otherwise. I respect that and will never try to out-issue anyone. We all deal with things differently. Some of us can spend hours talking about our problems with others. Some of us would rather not talk about them. Then there are those of us who don’t mind talking about them for a little bit, but then want to talk about other things or just sit quietly in a meditative state. MG loves meditation. It tends to act out more when it’s over-stimulated.
I have zero idea what my future holds for me regarding my super-charged immune system and its bag of goodies, my career and new business, my social and love life. I can’t say I’m thinking too much about it. I’m determined to do what I can right now for me. I’m weak on the outside and strong as steel on the inside. If the world can’t handle it, I’ll just have to punch it in the face!
A lot of what I’ve written here will find its way into a book that I’ve been very slooooowly putting together on MG. It’ll be finished some day.