Robert B.
Forum Replies Created
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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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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 helping.
I’d highly recommend that you take the sleep test. A nurse that attended to me said they have a number of people that come in after they’ve had a heart attack or stroke that state they were pretty sure they had sleep apnea in the past, but ignored it.
Best of luck to you!
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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 came down with it.
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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 psychiatrist for the anxiety medication, which has so far been a new, but good experience. I hope you get the relief you need!
Robert
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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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Yes, heat brings on severe fatigue. Add humidity and it’s worse.
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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 greatly.
Best of luck to you!
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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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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, before receiving treatment, both eyelids were virtually closed and what little vision I had was “double”. I couldn’t raise my arms above my head and couldn’t walk but a few steps before being totally fatigued.
I’m not saying I’m perfect with IVIG infusions, but I have a fairly normal life. My eyes are fine. I get fatigued very easily, so I have to take it easy. I’m on a 14 day treatment cycle with two treatments back to back, every other week. I’m very fatigued on the last two days, but the next treatment picks me back up again and I start all over again.
My point is, don’t give up hope. I bet there’s a solution that will give you back more of your life.
Robert
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If you’re 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 by Pfizer of this new pill Paxlovid, which they say is 89% effective for high-risk patients, to keep them from hospitalization and death, is yet another game changer.
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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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I would be interested to know how you do if you go on Rituximab. A previous neurologist that I had suggested that I give it a try a number of years ago, but after the trouble I had with insurance getting on IVIG, I was afraid to get off of it. This was back before the newer MG drugs had hit the market.
I’ve had gMG for 9 1/2 years and been on IVIG and Mestinon the entire time. Fatigue is my biggest issue, but the IVIG infusions help a great deal.
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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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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 the best course of treatment. I’ve never heard anyone speak about this, but there are some teaching universities that appear to do a lot of testing for MG drugs. Possibly you could go to one of them for their opinion. If anyone has gone this route, I’d love to hear if it has helped.
Robert
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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 way, but that’s it.
I guess the good news is that my 5-year old car only has 33,000 miles on it:)
If anyone else has had this problem and overcome it, I’d love to know how you’ve done so. Thanks.
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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 and neither of the two neurologists that I’ve seen have brought them up as problematic when reviewing my meds.
As mentioned, I’ve had two different neurologists (had to change from the first one because of insurance), both of which are products of UT Southwestern in Dallas. While both are very knowledgeable, I’ve found there’s things they just don’t get about gMG. For example, I mentioned to each that I miss not being able to play golf. Both of them said “why can’t you play golf?”. I can’t do anything strenuous, so it blew me away that they didn’t get this.
You take care and I hope things improve for you with your new doctor.
Robert
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You’re exactly right.