@oilman
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Robert B. replied to the topic What money can buy? in the forum Additional Resources 1 month ago
You might want to check with American Outcomes Management (AOM). They are both the pharmacy (send IVIG to your home) and provide the nurses that come to your home for infusions. My experience with them has been excellent?
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Robert B. replied to the topic Diagnostic criteria in the forum Healthcare and Myasthenia Gravis 1 month, 2 weeks ago
Hi Michelle,
I have a very severe case of generalized MG, coming down with it 9 years ago. For me, IVIG has made all the difference in the world. No, I didn’t get my old life back, but what I have today isn’t that bad. I receive infusions four times every 28 days, plus take Mestinon four times per day.
Best of luck to you in coming up with th…[Read more]
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Robert B. replied to the topic Traveling Solo with MG in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 months, 3 weeks ago
Am I the only person with gMG that has problems driving very far in a car? I can drive for 1 hour, have lunch with someone and return and I’m okay – tired, but okay. But anything more than that I become extremely fatigued – to the extent that I think I’m close to having a MG crisis. If my wife drives and I’m a passenger, I can go 1 1/2 hours each…[Read more]
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Robert B. replied to the topic CPAP Machines – do they work for breathing issues while sleeping in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 months, 3 weeks ago
Correction. I have an APAP machine, not CPAP.
With the in-clinic sleep test (I had the self-administered one at home, too, which was not as accurate), they can also determine the pressure flow you need and order your machine pre-set for it. Mine is set for 12-16, which is pretty high.
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Robert B. replied to the topic CPAP Machines – do they work for breathing issues while sleeping in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 months, 3 weeks ago
I’ve had generalized MG for nine years and have been on IVIG the entire time. For most of those years I would wake up in the mornings tired, which I attributed totally to the MG.
But recently I was tested for sleep apnea and I have it. I’ve been on a CPAP for only a couple of weeks now, and while I sometimes still wake up tired, I believe it’s…[Read more]
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Robert B. replied to the topic Is MG hereditary? in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 6 months, 2 weeks ago
I’m sorry to hear about your brother. It was my understanding that it wasn’t hereditary, but they are learning so much more about MG than when I was diagnosed nearly 9 years ago (with generalized MG), that may have changed.
That said, I was in an infusion center with a guy who had bulbar MG and a year or so after he was diagnosed his twin brother…[Read more]
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Robert B. replied to the topic Mood and Mental Health Medications With MG in the forum Mental Health, Self-Care, and Support 8 months ago
Hi Jodi,
I’ve had generalized MG for over 8 years and have taken an anti-depressant the entire time, with no problem. After having some anxiety issues of late, I’ve begun taking a prescription for that, too. It also helps me to get a good night sleep, which has always been a big deal since I’ve had MG.
My PCP suggested I get with a…[Read more]
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Robert B. posted a new activity comment 10 months, 2 weeks ago
Thank you, Jodi.
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Robert B. posted an update 10 months, 3 weeks ago
Have any of you with severe gMG attempted to travel to mountain locations or areas with high altitude? Walking up inclines tire me out so easily, plus the upper respiratory issues that come along with “thin air”, I’ve been afraid to do so. But fishing in a mountain stream sure sounds appealing with the intense heat we are having in N. Texas.
If…[Read more]
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Robert B. replied to the topic How do I know if I'm with the right Neurologist/Neuro-Specialist? in the forum Healthcare and Myasthenia Gravis 1 year, 1 month ago
Hi Lisa,
I’ve had gMG for 8 years & take Mestinon and receive four IVIG infusions every 28 days. My biggest issue is fatigue, but the infusions make life tolerable.
You mentioned Mucinex and Benadryl. I take both daily, and have for the entire eight years, with no problems. They weren’t on the “do not use list” I’ve used since being diagnosed…[Read more]
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Robert B. replied to the topic 4th shot? in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 year, 2 months ago
Hi David. I’ve not had my second booster, but plan to soon.
Knock on wood, taking all the precautions, including three doses of Moderna and wearing KN-95’s, isolating during peak times, I’ve avoided getting Covid. I have gMG, so it wouldn’t be good if I got it.
Best of luck to you,
Robert
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Robert B. 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
Yes, heat brings on severe fatigue. Add humidity and it’s worse.
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Robert B. replied to the topic Very new to my diagnosis. A bit confused and would like anyone to weigh in. in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 3 months ago
I’m also 65 and was diagnosed with gMG (generalized) 8 years ago. I’m on IVIG infusions, which have kept me stable.
Your neurologist can test you to see what kind of MG you have (there are several). If you have Ocular MG, it will probably only effect your eyes.
Getting plenty of sleep and resting during the day when I feel fatigued helps…[Read more]
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Robert B. replied to the topic Working with MG diagnosed as a senior in the forum Working/Careers and Myasthenia Gravis 1 year, 4 months ago
I’ll pray for you, Stanley!
I got generalized MG at 58 and I’m now 65. IVIG has kept me stable, which I’m thankful for.
God bless you and your family!
Robert
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Robert B. replied to the topic Mayo Clinic, Johns-Hopkins, Cleveland Clinic type centers; experiences/advice? in the forum Healthcare and Myasthenia Gravis 1 year, 5 months ago
I think you’re making a very wise decision, Michelle, whether it’s Mayo or some other quality medical clinic.
I’ve had generalized MG for 8 years – and a very severe case. I receive four IVIG infusions every 28 days and have had no deterioration so far. It’s a miracle drug for me. Plus I take four Mestinon tabs per day.
To give you an example,…[Read more]
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Robert B. replied to the topic Traveling With MG During COVID in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 year, 7 months ago
If your fully vaccinated, and especially if you’ve received the booster, my opinion is for you to “go for it”! Wear a mask indoors around crowds and I think you’ll be fine.
I have generalized MG, receive IVIG infusions 4x/28days and take Mestinon 4x/day, so a pretty high risk case. We’ve flown twice this year and everything went well.
The news…[Read more]
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Robert B. replied to the topic Misconceptions About MG in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 9 months ago
I’ve had two neurologists since I came down with generalized MG in 2014. In conversations about what I’d like to be able to do, both have said “Why can’t you play golf?” I’m like, what planet do you live on?
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Robert B. replied to the topic Misconceptions About MG in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 9 months ago
You’re exactly right.
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Robert B. became a registered member 1 year, 9 months ago
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Hello Robert! We are delighted to have you as part of our inclusive and judgment-free community of MG patients, caregivers, and families! Within the Myasthenia Gravis News Forums, we implement a safe space to share and discuss experiences, information, and news and offer guidance and support.
Please familiarize yourself with our forum rules in…[Read more]
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Robert, I am so glad you posted this topic. I have only met one individual with MG face-to-face; she just climbed Mount Kilimanjaro! Never succumb to the disease by limiting yourself, even if your body doesn’t feel inclined to hike at the moment. There is always hope.
I also loved day-long mountain hikes before MG, but I have not attempted an…[Read more]
Thank you, Jodi.