Kelley
Forum Replies Created
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No EMG here before taking Mestinon. Way back in the day (1996/97) I was diagnosed by a positive tensilon test. I had a negative EMG at a later date. I blame the tech using an unaffected muscle above my eye. My eyes rarely experience symptoms. My first symptom was vocal cord sluggishness causing soft voice and hoarseness.
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I was diagnosed 26 years ago. After a year I was able to get off prednisone and all the other meds I was on and resume my life with occasional MG symptoms (mostly breathing and vocal cord issues). This lasted until about 2014.
After a dose of Clindamycin my symptoms returned with a vengeance. I was running a karate studio with my husband and training for my 4th degree black belt. Prednisone, IVIg, Cellcept, Imuran, thymectomy, a few crises, bipap, plasma exchange, intubation, tracheostomy, 3 surgeries due to prednisone side effects, and lots of time later, I am relatively stable as long as I don’t get a cold and plan all activities (including showering, making a meal, picking up prescriptions etc) to coincide with mestinon and a ton of rest.
I still enjoy going to the karate school with my husband. I watch, support, and make verbal corrections when I’m strong enough. It still feeds my soul, just in a different way.
Besides karate which is directly affected by my MG, my grown kids and my elderly dog are my passions.
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100% it does. Heat and humidity ncrease my MG symptoms significantly.
Heat is my worst enemy and I wear an ice vest if I’m outside longer than a few minutes. And it’s not just outdoor heat. I can’t be in a warm room either and often wear my ice vest indoors at doctor appointments or picking up prescriptions. We keep the house at 58-60 in the winter and run the air conditioner all summer.
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Dysphagia
Disarthria
Dyspnea
Disphonia
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My vocal cords are keenly affected by MG. Talking is often difficult. I’m always hoarse to some degree and often need to whisper. Mestinon helps during the first 2 hours after taking it. But should I try to produce any volume, my vocal cords will freeze for a second or two, causing me to choke. My right vocal cord is partially closed all the time and I am conscious of it all the time. My muscles weaken with use; but I have learned how to manage them and have to rest most of the day. I am very lucky in that after getting MG controlled after my initial diagnosis; I had 16 years of minor symptoms before a dramatic return which has disabled me. I subscribe to spoon theory and make sure I don’t over tax myself. That alone can be intrusive. But worrying about vocal cord paralysis is the most intrusive.
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I’m always honest. All my friends and family know. For strangers I simply say that I have a neuromuscular disease that makes this (whatever it is) very difficult for me. If needed, I offer options or simply decline. I alone am responsible to keep myself from backsliding or going into crisis.
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Clindamycin brought me out of a semi remission. MG is much worse this time and not going anywhere. Be careful of any meds and good luck!
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PREDNISONE: exacerbated symptoms when I began taking it. Had a crisis and ended up in the hospital for 5 days of IVIg. I’ve been told this is common.
NOT LISTED: CLINDAMYCIN: brought me out of MG remission. It’s been 6 years, a thymectomy, 2 rounds of plasmapheresis, multiple rounds of IVIg, 3 crises, tons of mestinon, Prednisone, Imuran, and Cellcept trials… MG is still disabling me; but I’m relatively stable.
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I also have Hashimoto’s (I hear MG and this are often seen together – for me, MG came 1st), arthritis, SVT, asthma, migraines, neuropathies, and allergies. I see my PCP in 2 days for unexplained dizziness.
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I’m always honest and age appropriate. For a tracheostomy tube I told them it helped me breathe. For MG, I tell them my muscles are sick. Some kids get concerned because I don’t get “over it” or “better” like their colds… I let them know that it’s really rare for people to get sick like this and kids can’t get sick from me.
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I have a smaller, older dog (29lbs h 11yrs) who luckily, needs very small amounts of exercise. A few toy tosses and when I can, short walks, are sufficient for him. I have trouble brushing him so hubby does that, and lifts him into the sink to help with bathing. When I was hospitalized for 5 weeks 3 years ago for my last crisis, I cried every day for my dog. I missed him incredibly. When his time comes, I’ll get another small dog. Maybe not a puppy, though – I can’t keep up with them!
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I was on Cellcept for several months and it blew up my liver enzymes and my lipids. I tapered off of it immediately. I’m back on Imuran which doesn’t seem to have those issues for me. My neuro has bloodwork drawn every 1 to 3 months.
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Cellcept seriously elevated my liver enzymes and lipids. I stopped use and am now on Imuran. So far, labs on this med are OK. No matter which immunosuppressive treatment you’re on, make sure your labs are checked regularly. My docs have it done every 3-4 months.
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Had my 3rd Moderna 5 days ago. About 36 hours of a bad headache, mild nausea, chills, and joint/bone pain. (Imuran and prednisone) Slight increase in MG sxs. Since my neuro and PCP believe getting covid-19 would likely kill me, I got vaccinated. I’ve been wearing masks in public since before covid-19. I caught a cold that almost killed me. I’m not taking chances!
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100% agree. My dog, while untrained, is my emotional support dog for sure! I am not able to walk him every day; but he’s older now and does well with it. MG seriously affects my vocal cords. Having my dog nearby should this happen when I’m alone is crucial to my sense of well being. If I’m going to die from vocal cord paralysis, I need my dog beside me!
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Just to make sure I was clear: Cellcept is what caused very high liver enzymes and lipids in me… not mestinon.
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I use a vest I bought from Polar Products. It holds 9 gel ice packs. It’s not uncomfortable; but loading and unloading the packs can be tiring for me. It weighs about 4 pounds; but makes a huge difference in my level of heat tolerance. I’ve also noticed better heat tolerance with a lower dose of prednisone.