Sheila Troiano
Forum Replies Created
-
Another ” d ” word…disappointed. I’m disappointed in some family members lack of understanding. They don’t get that I my have said I would like to …such and such on a particular day. The day comes and I have a ” low” day and am physically unable to do what I thought I may be able to do. Most people I work with seem to be more understanding. I do work with nurses, doctors , social workers and therapists. You wouldn’t believe how many of us are suffering some type of autoimmune disorder. We are compassionate to each other and aware of some of our limitations. I wish my immediate family would ‘ wake up’ and be more supportive. It would be nice if even one of them would have watched the video that one of you so nicely shared a while ago about a day in the life of living with myasthenia. . I e been living with myasthenia for three years plus now. Sorry to say, my family still doesn’t get it.
-
Beware to those who attempt to take opioids for your pain DONT! With MG we have a higher chance of respiratory and neurologic complications. Could easily result in respiratory failure or crisis.  Also, for those who have been told they have migraines. Probably not. Especially if you have ho history. A lot of headaches with MG are related to weakened muscles of the neck. Trying to hold that heavy ball we call a head on an already weakened neck does cause head pain. Be careful with anything you add to your medication regime. Many medicines interact with your meds.
-
Oh, also, I am antibody positive
-
Anyone know if you have to undergo other treatments prior to starting Vygart to get it approved. I had to go off the imuran when I had COVID then was forced by my workplace to get the booster 3 wks after I had it. I can’t get back onto it. Everytime I restart, I get terrible vomiting without warning. Not really pleasant when a bathroom is far away and I work in healthcare. Do you need to try plasma or IVIG before they will approve Vygart?
-
I replied to this post in the past, but have an addition. I started having pains in my feet recently. I think cramping from the mestinon. I just purchased a homedics foot massager, got it on sale. Best purchase. It got rid of those awful cramps in my feet. If anyone else has foot cramps, it helps, although it says u can’t use if you have diabetes or circulatory problems.
-
I discovered a series by accident on Amazon Prime called “The Marvelous Mrs. Maisel”. Funny. Set in the late 50s to 60’s in NYC. A traditional Jewish family with a daughter who is a rebellious comic in the days when being a female comic was unheard of. Those who grew up in the 1950’s will be nostalgic. Those who are younger will get a glimpse of how different life was back then. I hope some of you may find it enjoyable. The next season( if you finish the first 3 seasons) starts Feb. 18 the.
-
<p style=”text-align: center;”>Hi, Sheila here. I had been diagnosed 3 yrs ago. My MG has it’s ups and downs. I still work full time as a psych RN and charge nurse. My coworkers are very aware. Some days are stressful, but I practice what I preach. Mindfulness and DBT skills help me as well as my patients. Some days I’m only taking a timespan and 3/ 60 mg mestinon. Other days up to 5-6 of the regular mestinon. When working, it is easy to get distracted from your own need for meds. In ” not paying attention” I’ve choked, aspirated, nearly fallen and not being able to speak with projection. I have learned to take more self care, otherwise I can’t be there for them. I’m hoping to be able to work longer, as I am 58 yrs old and I’ve worked very hard to get to the position I am in right now. Key thing is self awareness and positive vibes only, is my motto. I hope this helps some of my MG friends.</p>
-
I also was exposed to chlordane as a child, my parents used it to keep the bugs and ants out of the house. Also, I was exposed to asbestos, our pipes in the basement, when I was a kid, were wrapped in asbestos insulation. In the winter, my sister’s and I played in the basement. When the balls bounced and hit the ceiling, asbestos dust fell into our hair and we shook it out. I was exposed to a flea preparation as an adult, a few years before being diagnosed with MG. After giving cats a flea bath, the next day I was disoriented, felt like the world was tipping and I couldn’t walk. That was the first time I experienced double vision. I went to the hospital and as usual, they don’t look for the zebras in a pack of horses. A few years after, I was using a weed preparation. The same thing happened. In hindsight, I connected the two, looked at the ingredients and found both contained similar organophosphates. I’m 99% sure that all this had something to do with it. So, the answer is ” yes” I do believe chemical exposure can precipitate MG.
-
Yes, I understand. I think some of the pain results from muscle fiber exhaustion. Like when normal people exercise hard and get pain after; it only takes a little exertion sometimes for that to happen to someone with MG. Some pain is due to muscle cramps, side effects from mestinon. Im an RN and diagnosed myself when doctors couldn’t figure it out. I took the symptoms and the neurologist and testing confirmed. I believe I’d had it for years. I’ve had 2 serious injuries this year which I feel in some way, MG contributed to. I tore a muscle in my calf, I think from muscles being tense after meds and weakness which has developed over time. A bursitis of the shoulder acted up when I was non weight bearing and had to use a walker. Last year had a back injury and spent months in PT. I had a couple treatments with Prednisone to get me out of severe pain. And the main answer is ” yes” some pain is related to MG. And doctors can be so naive to this. Tending to be invalidating. I find my orthopedic doctors are more sensitive to this. Having MG , you have to advocate for yourself. Otherwise we don’t get the care that we so desperately need. Even if that need may be just validation that ” yes, it’s not in your head, your pain is real and there is pain associated with MG” I want to say, ” walk a mile in my shoes”
-
Yes, frequency and urgency are sometimes a problem. Also, feeling of not fully emptying your bladder. I find I stop and start. Takes more time in the bathroom than I’d like.
-
The neuro tested and it was at first equivocal. He retested and seronegative. Had other antibody tests musk etc also negative. Really bummed out. Limits your options if your abt negative. Would like to know when by Gary might be approved for seronegative
-
Yes, seronegative MG is challenging. I’m so tired of all these drugs that could be helpful but all you get is “sorry not for you cause your seronegative”. When will they realise it’s not really negative it’s just the tests are not picking up or it’s a different antibody. It’s very frustrating that there’s meds that can help you but …you can’t get them. Can’t take Prednisone, bad side effects athioprine did nothing. Mestinon timespan and multiple regular doses throughout the day is only partly effective. I know there’s more…but I’m not allowed to have the treatments that might help. Fatigue is the worst. I work full time and I crash in the afternoon. The depression is getting to me, it’s fed by the simple facts that I can’t get treatment that would help. So, at 60 yrs old. I’m in pretty good shape otherwise. But here I sit waiting…
-
Yes, it does seem that MG has included insomnia as a side effect. So cruel a part of the disease or side effect of medication. We are fatigued to the max at the end of the day and then have trouble sleeping. I have learned some tips that might help. Being a psych RN, I’ve had a lot of experience with medication. Trazodone will help you fall asleep, but you can get that ” sleeping pill sleep” falling asleep initially but then awakening 3-4 hrs after that. Morning hangover is common as well as nightmares, especially for those with PTSD, like those military persons who suffer MG. Melatonin, the same thing. I find that taking my last mestinon at least 5 hrs or more before bed, I find it activating at night. I do take a full timespan early in the day which carries me through the later day, without the activation and decrease muscle cramps during the night. I use a sound machine, white noise when I do awaken at night. I use doxylamine, unison , and it has not seemed to have a negative affect on my MG. I always wake up 1-3 x a night, that’s usual. But by using the machine and the unison help. Some people with insomnia find essential oils or diffusers with calming scents. I hope this will help some of my MG community.
-
I live in NJ which is unpredictable in the weather. I also find the humidity is worse than the heat. Yes, a large glass of ice water helps. It takes more than that when I decide I’ll do a whole day of gardening outside because it’s my only day off that week and it’s not raining outside. Last month, I pushed to hard and found myself unable to climb the steps on my deck to get back upstairs. I had to call my son to get me ice water and the hose. It helps when it’s hot to keep a hose nearby to cool you down. Cold showers, although not that pleasant, when you push too hard can be beneficial to restoring muscle strength. Cooling towels help. I freeze wet washcloths and place in plasticity. bags and stack in the freezer. Carry them in the bottom of my cooler when I go to the beach. Using these allows me to spend more time at the beach with my sister. At home, I try to keep the thermostat at 71 in the summer. I constantly battle my husband who says we are gonna go broke in electric costs. Are you kidding. I tell him, ” it’s that, or my MG is harder to deal with in the summer. Would you rather I suffer?” I’m not trying to make them uncomfortable, I’m just trying to survive and thrive with MG .