Jul
Forum Replies Created
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When I was taking mestinon for my MG (prior to a successful thymectomy) I did also notice that alcohol made symptoms worse. I just tried to avoid it or drink less socially when I did. I’m not sure about other substitutes, but I wonder if less use at once or small doses frequently of THC would still trigger. The only other “solution” I could think of maybe is working with a professional to learn meditation or another mindful skill to help with the anxiety when it comes.
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Of course my symptoms were so sporadic in the beginning that my primary couldn’t elicit the symptoms in the office. She was initially worried for stroke, but I told her I just knew it wasn’t that. ENT was worried for MS and after a clear MRI from ENT, I was sent to a neurologist who immediately diagnosed me based on symptoms. I had so many classic symptoms of MG. Blood test confirmed. All before diagnosis I had shingles and COVID.
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No other family members with MG that I’m aware of. I was diagnosed 5 months postpartum at the age of 28. My mother had several autoimmune issues (Common variable immune deficiency and aplastic anemia) and someone on my dad’s side with vitiligo. I also have vitiligo…luckily that seems to be harmless
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I lost a bunch of weight because of this and I would just try to eat more frequently. What used to take me 5-10 minutes to eat took 30 minutes or more and it was exhausting. I also tried to eat things that were easier and started doing protein shakes again. Cutting food up smaller, taking smaller bites, taking sips of water more frequently while eating etc. I am lucky to have since put back on the weight after a successful thymectomy.
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I was just diagnosed about 2 months ago after having symptoms for ~6 months. But I agree with what most are saying. Just pace yourself and take the meds when you need them. The pyridostigmine really helped me, but I know it doesn’t help everyone. I give myself some grace now and I’m not afraid to take a nap when I need one. I work night shift and have a 13 month old at home so it can be tough, but I try not to over do it.
As for the eating, I too had trouble chewing and swallowing before meds and lost some weight. I try to eat more frequently now and the meds have helped. Also more protein and more “value” to the foods I choose. One of my bigger struggles at this point is a loss of muscle mass and arm weakness just from not being able to work out like I used to. I hope things get better for you as you adjust. This new “lifestyle” is difficult. I’m preparing for a thymectomy this week in hopes that it will help my symptoms
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Yes, I realize just how lucky I am in all of this. Even my cardio thoracic surgeon told me how long it can take for a diagnosis.
I’m so sorry that it took so long for a diagnosis for you and that you had to retire. That’s a lot of life change all at once. I certainly hope things are better for you with the diagnosis and on mediation. I get my robotic thymectomy done tomorrow. Glad that I have the option for such a treatment. My finger strength gets weird too without my mestinon. It’s almost as if my fingers are not my own. Not sure how else to describe it!
And yes, I certainly am trying to enjoy every moment with my little one. Thank you! I wish you the best as well
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I am a dance teacher outside of my full time career so I do try to “participate” in everything I’m teaching. I do have to give myself breaks at times due to muscle fatigue, but staying on top of my mestinon helps a lot. I still experience arm weakness so there are things I can’t do anymore (10 push ups). Otherwise I take walks with my toddler which are less exhausting to my muscles!