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Maureen Gosz replied to the topic What Are Your Favorite Sports to Watch? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 7 months, 3 weeks ago
The Packers, Milwaukee Bucks, & the Badgers. I like the Brewers, but I can’t watch baseball! I really enjoy watching horse racing also. That’s on my bucket list, to see the Kentucky derby!
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Maureen Gosz replied to the topic Describe Your Journey With MG in 3 Words in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 8 months ago
Don’t make plans.
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Maureen Gosz replied to the topic Cannabis and Alcohol in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 8 months, 4 weeks ago
My husband and I have told people we know about the gummies & gel, but there is such a stygma about using it. Alot of people think that taking 1 gummy is going to do it for them. You have to be consistent and take them every day. We have been using for years now. My husband, with such a bad back, takes 2 every night. I take 3 every night, and we…[Read more]
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Maureen Gosz replied to the topic Cannabis and Alcohol in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 9 months ago
To John P.
Good luck! I hope it works for you! -
Maureen Gosz replied to the topic Cannabis and Alcohol in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 9 months ago
My husband and I both use a cbd roll on. The place we go to has 500 mg. or 1500 mg. It’s amazing. I have severe pain in my neck, and my husband has a bad back. It’s amazing! It works throughout the day, no side effects, and we take the gummies at night. My husband’s back was so bad, it would drop him to his knees. He did go to a chiropractor and…[Read more]
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Maureen Gosz replied to the topic Chewing With MG Weakness in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 9 months, 1 week ago
In the past 5 years, I have had my throat dilated twice. I ended up this last time, to find out I had an infection in my esophagus. I was constantly clearing my throat and coughing. So, after 21 days of meds, the coughing and throat clearing hasn’t gone away. Needless to say, swallowing is getting very difficult. They took a chest x-ray, and told…[Read more]
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Maureen Gosz replied to the topic Cannabis and Alcohol in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 9 months, 1 week ago
I take the cbd gummies or the delta 8 chocolate bar. Only in the evening though. It helps take the pain away in my legs and sleep a little better. I’ll drink a wine in the evening occasionally, but I usually add white soda to it. My doctors haven’t said anything about my use of it.
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Maureen Gosz replied to the topic The Costs of MG Treatments in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 9 months, 2 weeks ago
Greetings!
It has just gotten ridiculously costly. Inflation hasn’t helped any. The cost of meds & Inflation, more is coming out than what’s going into the bank.
It is getting very stressful. I did do the IVIG until my insurance company decided they weren’t going to pay for it anymore. It costed $25,000 a month for those treatments. I did it for…[Read more] -
Maureen Gosz replied to the topic Magnesium and Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 11 months ago
What do you look up to find out what drugs or supplements are bad for MG?
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Maureen Gosz replied to the topic Seronegative Diagnosis? Please read. in the forum About Our Forum/Welcome Lounge 11 months, 2 weeks ago
I have no idea why this dr questions everything my other dr did. My other dr was young & up on everything. The dr I’m seeing now is old, & old school. He keeps bringing up the past, of when things were like this, or that medication used to be called this. Really? Do I need to know that? I want here & now.
I am going to the Medical Teaching College…[Read more] -
Maureen Gosz replied to the topic Seronegative Diagnosis? Please read. in the forum About Our Forum/Welcome Lounge 11 months, 2 weeks ago
I was diagnosed with MG going on 3 years in August. Also seronegative. My neurologist put me on azathioprine, Mestinon, prednisone, and hyoscyamine, which helps immensely with stomach problems. He told me that I’m the best judge of how my body feels, and let me adjust the Mestinon myself. This worked out great. He really listened, and even had a…[Read more]
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Maureen Gosz replied to the topic What Are Your Life Passions? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 2 months ago
At 60 years old my lifes passions have changed. I was working with my horse to do endurance riding, when MG crept up on me. Being misdiagnosed for years ,I was finally diagnosed 2 years ago. Needless to say, I had to get rid of my animals.
I have always had a passion for flower gardening, which has expanded to many flower beds. I cannot do what I…[Read more] -
Maureen Gosz replied to the topic Does Temperature or Weather Trigger Your Symptoms? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 2 months ago
Omg! Definitely low pressure systems. We are in a rut right now with rain, rain, rain! I feel like I got hit by a dump truck!
The heat & humidity are also major factors in how I feel.
Kelley, you are correct with indoor temps also. It gets extremely warm where I work,& it sure takes a toll. I wear a cooling scarf, but will have to check out the… -
Maureen Gosz replied to the topic Eyesight Causing Driving Difficulties in the forum Healthcare and Myasthenia Gravis 1 year, 3 months ago
Hello Amy, thanks for the info. I am in the process looking for a new eye dr. There isn’t a neuro-opthalmologist around here, so a regular one will have to do.
Thanks again,
Maureen -
Maureen Gosz replied to the topic Eyesight Causing Driving Difficulties in the forum Healthcare and Myasthenia Gravis 1 year, 3 months ago
Ari, sorry to hear about another crisis. Thank you for the tip on the eye mask.
What happens with an occular crash? -
Maureen Gosz replied to the topic Eyesight Causing Driving Difficulties in the forum Healthcare and Myasthenia Gravis 1 year, 3 months ago
My eyes have been progressively getting worse. I can barely keep them open. They are red, swollen, painful burning, & feel like there is a ton of grit in them all the time. Occasionally I have double vision, it is more blurry than anything,& I do wear glasses. I do cold compresses which give me relief for a short time. Does anyone else have these…[Read more]
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Maureen Gosz replied to the topic Working with MG diagnosed as a senior in the forum Working/Careers and Myasthenia Gravis 1 year, 3 months ago
Anita, I love the analogy you gave of the energy of a sedated sloth! So true! Some days the fatigue is so bad, I could just drop where I stand.
I am 60,& was diagnosed in 2020. I grew up on a farm, & have a hobby farm, now, minus the animals. It just devastated me to get rid of my animals, especially my horse. It was getting to the point that I…[Read more] -
Maureen Gosz replied to the topic Do you have Seronegative MG? in the forum About Our Forum/Welcome Lounge 1 year, 3 months ago
Thanks Jodi! I was feeling pretty dumb with all the help people were giving me, & I still couldn’t figure it out! I don’t have a computer, just the phone. Thanks again! 😊
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Maureen Gosz replied to the topic Do you have Seronegative MG? in the forum About Our Forum/Welcome Lounge 1 year, 3 months ago
Ok,followed what you said, but I do not see the boxes that you mention, friend, public or private message. 🤔
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Maureen Gosz replied to the topic Do you have Seronegative MG? in the forum About Our Forum/Welcome Lounge 1 year, 3 months ago
I feel dumb. Did what you said, but still can’t find it. I’m done. I’ll just keep reading these responses as they come through. Thanks.
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