Well, I managed to stay out of Club Med for 9 whole months. I had gotten pretty used to dealing with my illness at home with my weekly IVIG. Sure I have had daily symptoms of weakness and vision issues that are a bother but I was getting used to managing my new life. Unfortunately the beast had other plans and a myasthenic crisis decended upon me on Monday.
For those of you who don't know, a Myasthenic Crisis is when the illness affects the muscles involved in swallowing and breathing. I have had three of these since my illness began, scary stuff when you can't communicate to the doctors what is going on but I will start at the beginning.
As you know, in September I had a port put in for my weekly infusions. It has worked wonders in not having to get jabbed multiple times trying to find a vein that will work with the IV but the incision never stopped itching and has been red the entire time. Not hot or oozing, just red. Last week my IVIG nurse said I should really let the surgeon know about the itching and redness so Monday morning I went in and showed the nurse what it looked/felt like. She spoke with the doctor and they said I should take Claritin for 7 days and call if it got worse or if after 7 days it didn't improve.
40 minutes after taking the Claritin, which I have never taken before, I couldn't open my eyes, lift my arms, or speak/breathe very well. My husband put a mestinon under my tongue and the weakness slightly subsided. An hour and a half later I was in dire straits, any attempt at breathing resulted in an awful sound and I was like a wet noodle. My hubby put me on my walker and wheeled me out to the car and rushed me to the ER. He explained what was going on and they rushed me back and gave me IV prednisone and ordered a NIF test (this tests the strength of the diaphragm muscle). The prednisone helped quite a bit and my NIF score was 20. Anything under 20 and they ventilate you and put you in the ICU which I never wish to experience so I was teetering. They admitted me to the hospital and ordered three days of IVIG and observation.
By day two my NIF was up to 25 and day three it was up to 30, then it went back down to 22, and then back up to 25. I was able to convince them to release me and let me have the 3rd day of treatment at home. I missed my kids and husband and my own bed and sleeping without people waking me up all the time blah, blah, blah.
So now I am resting and recovering. The best guess is that I was having an allergic reaction to the stitches under the skin and that the Claritin didn't agree with the MG and that pushed me into a crisis. So, no more claritin for me, I can deal with the itching until the stitches dissolve though I have no idea how long that will take:)
A few notes for those of you who haven't been admitted for a crisis/exacerbation. Make sure you have a binder/folder with a list of all of your medications, your neurologist's contact information, any test results from prior issues, any allergies or sensitivities, and a durable medical power of attorney so if you get ventilated you have someone who can speak for you. I also recommend requesting that you are able to self medicate your mestinon. I take mine every two hours and if it is late it is bad news, for the nurses about 80% of medications can wait 15 - 30 minutes without making the patient very sick but that isn't the case with myasthenics and mestinon so if you are strong enough make sure to insist this. Also pay close attention to the other meds they are giving you. Two of mine were incorrect. One they wanted to give me two extended release tablets of a med that I take 2 times a day and that would have resulted in an overdose. The other was the calcium I take. I take 500mg of calcium 3 times a day and they sent up Tums. While tums has calcium, the antacid part coats the stomach blocking the absorption of my much needed meds.
I hope this helps someone. For now, I rest and recharge. Stay strong.
Jen
Showing posts with label mestinon. Show all posts
Showing posts with label mestinon. Show all posts
Friday, November 5, 2010
Wednesday, August 25, 2010
Before the blog...my journey to diagnosis
So, since I have been horribly inactive I thought I would share the full, unadulterated story of what I went through on my journey to diagnosis. Warning - This Post Is Looong! I have to confess, life has been so busy and so crazy lately that I am taking this from an email I communicated to a newly diagnosed contact but it dawned on me that I didn't start my blog until after my January hospital stay so I would post it here...this is my story...
I was delivered the news that I have bicuspid aortic valve disease unexpectedly last June when I was hospitalized for what appeared to be a stroke. While performing all of the tests to see why the left side of my body was not working and the right side of my face was extremely weak (drooping eyelids, slurred speech, drooping mouth) they performed a bunch of scans/CT/MRI/blood tests and... a chest echo. I was discharged from the hospital with a tentative diagnosis of either anxiety due to stress (though I revealed that life was going quite well aside from the fact that I was hospitalized on my 10 year wedding anniversary) or complex migraines (which was funny to me since I have suffered migraines since I was 16 years old and this “stroke” event did not have the vision auras or any head pain…at all that always accompany a migraine).
Two days after my 3 day hospital stay I saw my GP for follow up and found out that they discharged me without even reviewing the echo. To my surprise, out of all the tests run, this was the only one that was abnormal. It showed a Bi-Cuspid Aortic Valve with insufficiency, mitral valve insufficiency, and tricuspid valve insufficiency with evidence of mild pulmonary hypertension. So, off to the cardiologist I went. The cardiologist performed a TEE which confirmed the BAD with
insufficiency but showed only mild mitral and tricuspid insufficiency and no pulmonary hypertension. He said, you are fine and your heart is unrelated to the stroke like event. I had done some research and had many of the symptoms of pulmonary hypertension: fatigue, shortness of breath, and a feeling of pressure on my chest when I did the slightest of activity. In addition to that I had extreme residual weakness of my eyes and my arms/hands and I was determined to get to the bottom of it considering the fact that I have two young children and I am the primary breadwinner while my husband is back in school. I called a friend of mine who is an RN and she said there was a local Pulmonary Hypertension clinic and gave me the number. Two days later I was in the office of the pulmonologist who saved my life, though neither one of us knew it at the time.
My pulmonologist performed a six minute walk test and after 2 minutes my oxygen SATS dropped to 80, they put me on supplemental oxygen for the remainder of the test and they didn’t go above 88. After the test was finished and I was sitting for 5 minutes they shot up to 100%. He took off the oxygen and they stayed at 100% until he had me get up and walk again, then they fell right back down again. So, he said, there is definitely something wrong with you and I promise to get to the bottom of it. I was prescribed oxygen to use anytime I wasn’t sitting in a chair or laying down, but also when sleeping. Then he one by one ordered the million dollar work up. I had a Chest X-Ray, a Chest CT with contrast, a nuclear pulmonary V/Q scan, a whole body V/Q scan, and a right heart cath. All came back normal so thankfully I did not have pulmonary hypertension. Unfortunately we had no answers except
for the fact that I had an oxygenation problem, weakness, and a Bicuspid Aortic Valve. I also found out that my aortic root had enlarged since a prior CT was performed in 2007, but it certainly wasn't causing these problems. After researching this I found out that people with Bicuspid Aortic Valves are born with connective tissue issues that make them more prone to Aortic Aneurysms, like I needed one more thing to deal with!
In the midst of all these tests I went back to the Neuro who saw me at the hospital, after an EEG he decided it must be complex migraines and wanted to put me on a beta blocker. My old doctor tried that on me and it landed me unconscious in the ER with a blood pressure of 70/50. So, you can imagine my dismay at his recommendation. I said, I am happy to try your theory if you would be willing to run some additional tests first. He was so offended that I would not try the beta blockers and that I challenged his diagnosis that he dropped me as a patient. I walked to my GP’s office in tears (they work in the same building) he told me the guy was a pompous “fill in the blank” and not to worry about him, we would figure this out together. Apparently the neuro I saw went to Harvard and thought he was a big
fish in a little pond and had quite the reputation for upsetting or blowing off patients...just my luck.
The next week I was scheduled for a pulmonary function test which was ordered by my pulmonologist. Note this is the least invasive and least expensive all the tests ordered. At any rate, I was alarmed when my pulmonologist called a few nights later to inform me that the test showed diaphragm weakness due to a neuromuscular disorder. He referred me to a different neurology office and said we may be on the
right path. I went to the appointment and after performing the exam the doctor took a step back and said “I think you have Myasthenia Gravis” this was due to the fatigable generalized weakness and the ptosis from the eye strength test. She called in four residents to show them what it looked like and explained that while there is no cure there is treatment, I said sign me up! However, she wanted to
confirm with the blood test. When the blood test came back negative she was very aloof and said, well I don’t know what it is, maybe vasculits or something. When I asked if I could try a trial dose of Mestinon or Prednisone she said no, there is nothing more I can do for you. I later learned, when gathering my medical files that she suspected anorexia. I went from 150 pounds to 125 pounds and shrinking in two weeks and by the time I saw her (almost 2 months after my hospital stay) I was 115 due to the fact that it was extremely difficult for me to swallow! Note that for a woman who is 5’6” 115 is not considered underweight though the rapid rate at which I was wasting away sure scared the heck out of me. Okay, so that was late August.
I spoke with my GP and he referred me to the University of Michigan. He personally called the head neurologist to discuss my case and by early October I was in Ann Arbor and hopeful for some answers. After going through my 3rd neurological exam, my second EMG, my first single fiber EMG, and more blood tests, the head of Neurology diagnosed me with “suspected sero-negative generalized Myasthenia Gravis.” The only thing he was scratching his head at was the rapid rate at which
my oxygen fell with any level of activity but he did start me on
Mestinon (this was later confirmed to definitely be due to the MG but more on that later). My dad had taken me to that appointment and I was so anxious for any type of relief that I made him drive straight to the nearest pharmacy in Ann Arbor. I took my first mestinon and 30 minutes later I did not sound like I had marbles in my mouth and I could read the highway signs. I said, “dad, this is it, they finally
figured me out!” I was ecstatic!
The prescription called for me to take 30mg of Mestinon every 4 hours and titrate up until I had side effects…i.e.I ran to the bathroom with what was second only to the urgency of a colonoscopy prep. That dosage was 60mg every 4 hours and so my journey began. A few weeks later I called U of M because while the Mestinon helped me during the day, after I slept I could not move my arm to turn off the alarm clock
and was so weak that a few times I fell after getting out of bed. I was also starting to feel kind of dizzy. The neurologist prescribed Mestinon Timespan for bedtime so the Mestinon wouldn’t wear off while I slept. It worked like a charm for my morning strength but the dizziness was still there, I felt like I had just stepped off a boat, or had a few too many cocktails.
Four weeks after my tentative diagnosis and med trial I had a follow up scheduled with my pulmonologist and new cardiologist. To my amazement I passed the 6 minute walk test without oxygen…bye, bye oxygen tank! I literally happy danced myself out of the office (albeit weak and out of breath, I didn't care I got to ditch the tank)!They said my diaphragm must have been so fatigued that it caused atelectasis which caused the lack of oxygenation. They said it was a pretty good confirmation of MG. So I got through November until Thanksgiving. I don’t know if I caught a bug or was just doing too much given how good I felt compared to how bad it was for 6 months
but I spent the first week of December hospitalized with a crisis. My breathing was severely affected and so were my legs. I was given 5 days of IVIG at the hospital by the pompous neuro previously mentioned who apologized to me a gazillion times and at discharge I was given a walker and In home nursing care for four weeks. At the
end of the nursing care which included physical therapy I was able to walk unassisted for most of the time. One week later I was in Ann Arbor for follow up with my fantastic neuro who confirmed the diagnosis and added prednisone and regular IVIG to my treatment schedule..
Unfortunately, I must have picked up a bug somewhere because a few days later I felt lousy, and I mean lousy. I checked my oxygen sats (I ordered a pulse ox off amazon.com when I was on the oxygen tank to monitor what my readings were) and my pulse kept shooting up and my oxygen kept dropping. I called my neuro right away and he said I was headed for a crisis fast and said I needed to go back to the
hospital. I said I didn’t want to go to the same one I had been at previously so he called the other major hospital in our city and spoke with a very kind, non pompous, 72 year old neurologist who followed his orders to a “T” and offered to assist me with any local needs I may have under the direction of my specialist in Ann Arbor. He was amazing, in my room at 8am every morning to check up on me and chat. I had 3 days of IVIg and started on bi-weekly in home treatments after
that.
The rest of the story is available here...on my blog.
Hugs and blessings,
Jen
I was delivered the news that I have bicuspid aortic valve disease unexpectedly last June when I was hospitalized for what appeared to be a stroke. While performing all of the tests to see why the left side of my body was not working and the right side of my face was extremely weak (drooping eyelids, slurred speech, drooping mouth) they performed a bunch of scans/CT/MRI/blood tests and... a chest echo. I was discharged from the hospital with a tentative diagnosis of either anxiety due to stress (though I revealed that life was going quite well aside from the fact that I was hospitalized on my 10 year wedding anniversary) or complex migraines (which was funny to me since I have suffered migraines since I was 16 years old and this “stroke” event did not have the vision auras or any head pain…at all that always accompany a migraine).
Two days after my 3 day hospital stay I saw my GP for follow up and found out that they discharged me without even reviewing the echo. To my surprise, out of all the tests run, this was the only one that was abnormal. It showed a Bi-Cuspid Aortic Valve with insufficiency, mitral valve insufficiency, and tricuspid valve insufficiency with evidence of mild pulmonary hypertension. So, off to the cardiologist I went. The cardiologist performed a TEE which confirmed the BAD with
insufficiency but showed only mild mitral and tricuspid insufficiency and no pulmonary hypertension. He said, you are fine and your heart is unrelated to the stroke like event. I had done some research and had many of the symptoms of pulmonary hypertension: fatigue, shortness of breath, and a feeling of pressure on my chest when I did the slightest of activity. In addition to that I had extreme residual weakness of my eyes and my arms/hands and I was determined to get to the bottom of it considering the fact that I have two young children and I am the primary breadwinner while my husband is back in school. I called a friend of mine who is an RN and she said there was a local Pulmonary Hypertension clinic and gave me the number. Two days later I was in the office of the pulmonologist who saved my life, though neither one of us knew it at the time.
My pulmonologist performed a six minute walk test and after 2 minutes my oxygen SATS dropped to 80, they put me on supplemental oxygen for the remainder of the test and they didn’t go above 88. After the test was finished and I was sitting for 5 minutes they shot up to 100%. He took off the oxygen and they stayed at 100% until he had me get up and walk again, then they fell right back down again. So, he said, there is definitely something wrong with you and I promise to get to the bottom of it. I was prescribed oxygen to use anytime I wasn’t sitting in a chair or laying down, but also when sleeping. Then he one by one ordered the million dollar work up. I had a Chest X-Ray, a Chest CT with contrast, a nuclear pulmonary V/Q scan, a whole body V/Q scan, and a right heart cath. All came back normal so thankfully I did not have pulmonary hypertension. Unfortunately we had no answers except
for the fact that I had an oxygenation problem, weakness, and a Bicuspid Aortic Valve. I also found out that my aortic root had enlarged since a prior CT was performed in 2007, but it certainly wasn't causing these problems. After researching this I found out that people with Bicuspid Aortic Valves are born with connective tissue issues that make them more prone to Aortic Aneurysms, like I needed one more thing to deal with!
In the midst of all these tests I went back to the Neuro who saw me at the hospital, after an EEG he decided it must be complex migraines and wanted to put me on a beta blocker. My old doctor tried that on me and it landed me unconscious in the ER with a blood pressure of 70/50. So, you can imagine my dismay at his recommendation. I said, I am happy to try your theory if you would be willing to run some additional tests first. He was so offended that I would not try the beta blockers and that I challenged his diagnosis that he dropped me as a patient. I walked to my GP’s office in tears (they work in the same building) he told me the guy was a pompous “fill in the blank” and not to worry about him, we would figure this out together. Apparently the neuro I saw went to Harvard and thought he was a big
fish in a little pond and had quite the reputation for upsetting or blowing off patients...just my luck.
The next week I was scheduled for a pulmonary function test which was ordered by my pulmonologist. Note this is the least invasive and least expensive all the tests ordered. At any rate, I was alarmed when my pulmonologist called a few nights later to inform me that the test showed diaphragm weakness due to a neuromuscular disorder. He referred me to a different neurology office and said we may be on the
right path. I went to the appointment and after performing the exam the doctor took a step back and said “I think you have Myasthenia Gravis” this was due to the fatigable generalized weakness and the ptosis from the eye strength test. She called in four residents to show them what it looked like and explained that while there is no cure there is treatment, I said sign me up! However, she wanted to
confirm with the blood test. When the blood test came back negative she was very aloof and said, well I don’t know what it is, maybe vasculits or something. When I asked if I could try a trial dose of Mestinon or Prednisone she said no, there is nothing more I can do for you. I later learned, when gathering my medical files that she suspected anorexia. I went from 150 pounds to 125 pounds and shrinking in two weeks and by the time I saw her (almost 2 months after my hospital stay) I was 115 due to the fact that it was extremely difficult for me to swallow! Note that for a woman who is 5’6” 115 is not considered underweight though the rapid rate at which I was wasting away sure scared the heck out of me. Okay, so that was late August.
I spoke with my GP and he referred me to the University of Michigan. He personally called the head neurologist to discuss my case and by early October I was in Ann Arbor and hopeful for some answers. After going through my 3rd neurological exam, my second EMG, my first single fiber EMG, and more blood tests, the head of Neurology diagnosed me with “suspected sero-negative generalized Myasthenia Gravis.” The only thing he was scratching his head at was the rapid rate at which
my oxygen fell with any level of activity but he did start me on
Mestinon (this was later confirmed to definitely be due to the MG but more on that later). My dad had taken me to that appointment and I was so anxious for any type of relief that I made him drive straight to the nearest pharmacy in Ann Arbor. I took my first mestinon and 30 minutes later I did not sound like I had marbles in my mouth and I could read the highway signs. I said, “dad, this is it, they finally
figured me out!” I was ecstatic!
The prescription called for me to take 30mg of Mestinon every 4 hours and titrate up until I had side effects…i.e.I ran to the bathroom with what was second only to the urgency of a colonoscopy prep. That dosage was 60mg every 4 hours and so my journey began. A few weeks later I called U of M because while the Mestinon helped me during the day, after I slept I could not move my arm to turn off the alarm clock
and was so weak that a few times I fell after getting out of bed. I was also starting to feel kind of dizzy. The neurologist prescribed Mestinon Timespan for bedtime so the Mestinon wouldn’t wear off while I slept. It worked like a charm for my morning strength but the dizziness was still there, I felt like I had just stepped off a boat, or had a few too many cocktails.
Four weeks after my tentative diagnosis and med trial I had a follow up scheduled with my pulmonologist and new cardiologist. To my amazement I passed the 6 minute walk test without oxygen…bye, bye oxygen tank! I literally happy danced myself out of the office (albeit weak and out of breath, I didn't care I got to ditch the tank)!They said my diaphragm must have been so fatigued that it caused atelectasis which caused the lack of oxygenation. They said it was a pretty good confirmation of MG. So I got through November until Thanksgiving. I don’t know if I caught a bug or was just doing too much given how good I felt compared to how bad it was for 6 months
but I spent the first week of December hospitalized with a crisis. My breathing was severely affected and so were my legs. I was given 5 days of IVIG at the hospital by the pompous neuro previously mentioned who apologized to me a gazillion times and at discharge I was given a walker and In home nursing care for four weeks. At the
end of the nursing care which included physical therapy I was able to walk unassisted for most of the time. One week later I was in Ann Arbor for follow up with my fantastic neuro who confirmed the diagnosis and added prednisone and regular IVIG to my treatment schedule..
Unfortunately, I must have picked up a bug somewhere because a few days later I felt lousy, and I mean lousy. I checked my oxygen sats (I ordered a pulse ox off amazon.com when I was on the oxygen tank to monitor what my readings were) and my pulse kept shooting up and my oxygen kept dropping. I called my neuro right away and he said I was headed for a crisis fast and said I needed to go back to the
hospital. I said I didn’t want to go to the same one I had been at previously so he called the other major hospital in our city and spoke with a very kind, non pompous, 72 year old neurologist who followed his orders to a “T” and offered to assist me with any local needs I may have under the direction of my specialist in Ann Arbor. He was amazing, in my room at 8am every morning to check up on me and chat. I had 3 days of IVIg and started on bi-weekly in home treatments after
that.
The rest of the story is available here...on my blog.
Hugs and blessings,
Jen
Saturday, April 24, 2010
Appetite and chronic disease
After making an "appetite bigger than stomach" mistake yesterday, and continuing to pay for it royally today, I thought I would blog about my personal challenges with food/weight loss/weight gain/etc...
When I first became ill with Myasthenia my muscles atrophied fast, my diaphragm was very weak, and my oxygen exchange was so poor that I relied on an oxygen tank to walk anywhere/sleep/shop/drive pretty much anything but sit in a chair. During that time I struggled constantly to eat. Eating made me feel sick, nauseaus. My organs weren't functioning properly due to lack of oxygen so it was very difficult to digest anything I ate. During that time I lost 25 pounds in as many days. I became so frail that one of the doctors put that she suspected anorexia in her notes. This saddened me as I fought daily to eat...anything.
After my diagnosis my appetite came back but by that time my stomach had become pretty small. Once I started the Mestinon I was getting stronger and food didn't disgust me anymore. I remember the first week I started the med going to my favorite lunch joint and cleaning my plate...I paid for that dearly when I learned what happens when you hit your max dose of Mestinon. For those of you who don't know, it hangs out at the neuromuscular junction giving the nerve signal a better chance to make it to the muscle receptor. When you hit your magic dose, it tends to stimulate the colon...suffice it to say I didn't gain any weight from that lunch;) But that's enough about that fun topic.
Moving forward to the medication that everyone who is anyone in the autoimmune disorders community eventually gets prescribed; PREDNISONE...oh the dreaded, beautiful prednisone. Get too little, it doesn't help at all... get too much and you end up with moon face, hump back, hair where you don't want it, and much much more...get just the right amount and hopefully you won't suffer major mood swings, diabetes, or osteoperosis. Fun right? One thing is for sure, no matter what your dose you will get hunger attacks where you can't control your appetite. this happened to me yesterday after a visit to Taco Bell...therein lies my first mistake!
So, lessons learned, just because the pit of your stomach is telling you it is a good idea to drink a bucket of Dr. Pepper and eat two taco supremes followed by a mexican pizza does not mean you should follow instruction. It turns out the stomach has a small IQ and a horrible memory. It has almost been 12 hours and I can still feel the ball of fast food hell eating a hole in my stomach lining. Oh, and in case you were wondering...if you cave in and listen to your stomach like I foolishly did..DO...NOT..BUY...FOOD...FOR...THE...KIDS...what they don't know won't hurt them. But when they come home from school 2 hours later and want to dine on what has your stomach in a vice, well you don't want to find out:)
That is all for now Ta, Ta, I am off to plays with the kiddos.
Hugs,
Jen
Sunday, January 31, 2010
Some corrections, and a work update
Good Morning, I wanted to start off by making some corrections to previous posts. The first was my description of how Mestinon works. It doesn't send more messages, it actually allows the acetylcholine to hang out at the neuromuscular junction longer allowing it to have a better chance of hitting on a healthy muscle receptor. I'm super tired today, which leads to brain fog and since I didn't write them down I will have to post the rest of my corrections at a later time. Oh, I remember one more, I had asked for prayer for my father in law, keep them coming. His surgery was supposed to be this week, it is now going to be at least 3 weeks out, maybe more, pray for a cancellation.
Our family had a wonderful day yesterday. We had a birthday party for John. It was a pool party for him and four of his friends. We timed it between check out and check in so they had the whole pool and a lifeguard to themselves. Five 10 year olds each armed with two squirt guns, goggles, and a large indoor water slide = FUN!
Back to the subject of work. My big meeting went very well. I will be putting in more hours because it has been decided that I may work from home!!!! The difference between waking up, logging on, forwarding my phone, taking a real rest during lunch hour, and hopping back on for a few hours versus waking up, getting dressed and prettied up, driving 25 minutes to work, and then working will give me a MUCH MUCH better chance at returning to work healthy and productive. I will start my new schedule tomorrow. Thank you everyone for your support, even though most of you don't know how to sign up to follow the blog:) At least you email your feedback.
Lots of Love,
Jen
Our family had a wonderful day yesterday. We had a birthday party for John. It was a pool party for him and four of his friends. We timed it between check out and check in so they had the whole pool and a lifeguard to themselves. Five 10 year olds each armed with two squirt guns, goggles, and a large indoor water slide = FUN!
Back to the subject of work. My big meeting went very well. I will be putting in more hours because it has been decided that I may work from home!!!! The difference between waking up, logging on, forwarding my phone, taking a real rest during lunch hour, and hopping back on for a few hours versus waking up, getting dressed and prettied up, driving 25 minutes to work, and then working will give me a MUCH MUCH better chance at returning to work healthy and productive. I will start my new schedule tomorrow. Thank you everyone for your support, even though most of you don't know how to sign up to follow the blog:) At least you email your feedback.
Lots of Love,
Jen
Thursday, January 21, 2010
How does MG affect me?
I thought it would be a good idea to explain what this disease has done to me. Medically it is an autoimmune disorder where my immune system attacks my muscle receptors. This means that when my brain tells my arm to lift up and sends a nerve impulse to the muscle sometimes the message makes it to a healthy receptor and sometimes it ends up at a damaged receptor resulting in the inability to lift my arm or at times it is simply more difficult to lift my arm. My brain, nerves, and muscles are all there and the neuromuscular junction has many receptor sites to hit but the fact that my body thinks the receptors are a virus doesn't give my system the same shot at making the connection as it does in a healthy person. I liken it to a marrionette. With all of it's strings a puppet master is able to move the puppet in any way he/she commands, if you start cutting strings, the puppet becomes a rag doll. Is anyone else humming Pinnochio music in their head..."I've got no strings to hold me down, to make me smile, to make me frown:)" Thank goodness for parentheses and colons:):):) Okay so that is the technical mumbo jumbo dumbed down.
People with myasthenia can have different muscle groups attacked at different times. In my case my diaphragm was hit the hardest which affected my breathing and subsequently the only hobby I am passionate about - singing:( The first flare up I had also went after my wrists, grip, and arm strength. To apply it candidly, if I wanted to unload the dishwasher the first dish would feel normal to lift, the second like a 5 pound weight, the third like a sack of potatoes, and the fourth I would drop if I attempted it. With Myasthenia, the more you use the muscle being attacked the less it responds. It is possible to recover from an attack with rest and medication, primary immunosuppresants and IVIG or Plasmapherisis. Mestinon is a go to daily med for myasthenia which is a great help but it doesn't stop the destruction of the muscle receptors, it just sends more messages from your brain so there is a greater chance of the message making it to the muscle.
My second major attack went after my ankles and legs and I was unable to walk at all for 48 hours. Even after 5 days in the hospital with IVIG treatment I could not lift my foot off the ground and was sent home with a walker. Thankfully I recovered and by the end of December was able to ditch the walker except for bad days. An extra special thanks to Pam my visiting physical therapist. Her determination to help me recover and her compassion to learn about Myasthenia made a very difficult time a little easier.
Which leads me to the next part of the daily struggles with this illness. I tow a fine line between keeping active enough to maintain muscle mass and overdoing it resulting in muscle attacks which lead to atrophy. I have days where I feel normal for four hours and like I am paralyzed for the rest of the evening. I have days where I have energy for 8 hours and then I start tripping on my toes. The most embarrassing symptoms for me are when it affects my speech and my eyes. I end up with slurred speech, a hoarse voice, my mouth stuck in a 1/2 frown drooping on one side, and unable to open my right eye. It has affected my freedom in that I have frequent bouts of double vision caused by minor misalignment of my eyes from the muscle weakness making it scary to drive. Thank God for my in-laws, they have done more than I can ever thank them for. They have picked up my kids, gone to the grocery store when I couldn't tolerate the walk, babysat me so I could take care of my children while Pat goes to night class, brough meals, and on, and on.
And I have to give equal thanks to my Grandparents for the many hospital visits and nightly phone chats, my dad and step-mom for sitting with me during my three hour in hospital IVIG treatments and the many trips back and forth to Ann Arbor (and Trader Joes:), and my sister for working at my GP's office and making seemingly impossible communication possible.
It is hard to explain to people when i look normal why I have to park in handicapped parking, why I have to sit alot, why I can't talk on the phone for long periods, that going out for dinner or a long car ride could mean I can't do anything for the next few days. What tugs at my heartstrings the most though is how little I am able to do with my children compared to last year. Last year at this time a typical day consisted of getting up at 6am, dropping the kids off at school, working 8 hours, picking the kids up, stopping at the grocery store, going to the Y to work out and let the kids play or swim, coming home and cooking dinner, doing laundry, dishes, etc... Now I am exhausted if I work for 2 hours or put clothes in the washer and forget about carrying baskets. Instead of an hour on the elliptical three times a week, frequent walks with the kids, maybe a night out at karaoke, I strugle to do my physical therapy which consists of sitting and raising my leg 10 times and doing bicep curls with soup cans.
With all of that said, I am thankful that I have a wonderful doctor overseeing my care. I am thankful to have friends, family, and coworkers who have supported me in spirit and strength. I am thankful to my Church community for the meals and the phone calls just to check in. I am thankful to have such a loving and supportive husband to ride this rollercoaster faithfully (though not always joyfully)with me. And most of all kids who keep laughter and love in our home every day. They are content to play board games or watch a show or put on a show for me, this may help their future acting careers:)
So, that is basically how MG affects me. If you know someone with MG or have MG they may share some similarities but none of us is the same. We each face separate challenges, have separate strengths, respond differently to treatment, but we know emotionally how the new normal feels.
People with myasthenia can have different muscle groups attacked at different times. In my case my diaphragm was hit the hardest which affected my breathing and subsequently the only hobby I am passionate about - singing:( The first flare up I had also went after my wrists, grip, and arm strength. To apply it candidly, if I wanted to unload the dishwasher the first dish would feel normal to lift, the second like a 5 pound weight, the third like a sack of potatoes, and the fourth I would drop if I attempted it. With Myasthenia, the more you use the muscle being attacked the less it responds. It is possible to recover from an attack with rest and medication, primary immunosuppresants and IVIG or Plasmapherisis. Mestinon is a go to daily med for myasthenia which is a great help but it doesn't stop the destruction of the muscle receptors, it just sends more messages from your brain so there is a greater chance of the message making it to the muscle.
My second major attack went after my ankles and legs and I was unable to walk at all for 48 hours. Even after 5 days in the hospital with IVIG treatment I could not lift my foot off the ground and was sent home with a walker. Thankfully I recovered and by the end of December was able to ditch the walker except for bad days. An extra special thanks to Pam my visiting physical therapist. Her determination to help me recover and her compassion to learn about Myasthenia made a very difficult time a little easier.
Which leads me to the next part of the daily struggles with this illness. I tow a fine line between keeping active enough to maintain muscle mass and overdoing it resulting in muscle attacks which lead to atrophy. I have days where I feel normal for four hours and like I am paralyzed for the rest of the evening. I have days where I have energy for 8 hours and then I start tripping on my toes. The most embarrassing symptoms for me are when it affects my speech and my eyes. I end up with slurred speech, a hoarse voice, my mouth stuck in a 1/2 frown drooping on one side, and unable to open my right eye. It has affected my freedom in that I have frequent bouts of double vision caused by minor misalignment of my eyes from the muscle weakness making it scary to drive. Thank God for my in-laws, they have done more than I can ever thank them for. They have picked up my kids, gone to the grocery store when I couldn't tolerate the walk, babysat me so I could take care of my children while Pat goes to night class, brough meals, and on, and on.
And I have to give equal thanks to my Grandparents for the many hospital visits and nightly phone chats, my dad and step-mom for sitting with me during my three hour in hospital IVIG treatments and the many trips back and forth to Ann Arbor (and Trader Joes:), and my sister for working at my GP's office and making seemingly impossible communication possible.
It is hard to explain to people when i look normal why I have to park in handicapped parking, why I have to sit alot, why I can't talk on the phone for long periods, that going out for dinner or a long car ride could mean I can't do anything for the next few days. What tugs at my heartstrings the most though is how little I am able to do with my children compared to last year. Last year at this time a typical day consisted of getting up at 6am, dropping the kids off at school, working 8 hours, picking the kids up, stopping at the grocery store, going to the Y to work out and let the kids play or swim, coming home and cooking dinner, doing laundry, dishes, etc... Now I am exhausted if I work for 2 hours or put clothes in the washer and forget about carrying baskets. Instead of an hour on the elliptical three times a week, frequent walks with the kids, maybe a night out at karaoke, I strugle to do my physical therapy which consists of sitting and raising my leg 10 times and doing bicep curls with soup cans.
With all of that said, I am thankful that I have a wonderful doctor overseeing my care. I am thankful to have friends, family, and coworkers who have supported me in spirit and strength. I am thankful to my Church community for the meals and the phone calls just to check in. I am thankful to have such a loving and supportive husband to ride this rollercoaster faithfully (though not always joyfully)with me. And most of all kids who keep laughter and love in our home every day. They are content to play board games or watch a show or put on a show for me, this may help their future acting careers:)
So, that is basically how MG affects me. If you know someone with MG or have MG they may share some similarities but none of us is the same. We each face separate challenges, have separate strengths, respond differently to treatment, but we know emotionally how the new normal feels.
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