CarlyMichelle
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- I know a lot of folks only take it at night or it hasn't worked for them, but Timespan has been wonderful for me. It has really helped with some of my autonomic (POTS) dysfunction as well as my MG. Doing the happy dance! :)Carly
- He's putting me on the timespan Mesty. Who hoo! I've got gastroparesis, so I am unsure how it will release over time.The dr. said I could augment with regular Mestinonif the timespan wore off before bedtime. I'm excited about nothaving to think...
- I find that Mestinon makes PT much more doable, but the downtime afterwards is hard on me. I don't think I can continue with 2x a week.(the PT isn't for the MG)Carly
- Okay, I have a SIL that is really hyped up about going on a family cruise.I can't imagine doing all that walking on a cruise ship! Also, they are mostly likely NOT equipped for an MG crisis. My SIL read that MG folks live a basically normal...
- I got an SFEMG done recently with one of the best MDs in the country.She had a hard time getting it done b/c my muscles were not cooperating as she put it. It was excruciating to say the least and I'm a brave lady!Still, it was for a good cause....
- I'm on Augmentin, metoprolol (beta blocker), Lasix, and inhaled steroids for my asthma along with Colace and Miralax. Of course, they told me to stop my mestinon for at least 24 hours before the test.I'd heard somewhere that asthma meds can affect...
- I keep getting bronchitis since my dx of asthma last year.Right now I'm battling flu AND bronchitis. No pneumonia yet.I pray to just not have a crisis or go in the hospital. I stay homewith our kids, so I don't know what I'd do if I had a crisis and...
- How is this different than an EMG?She's doing a regular EMG and NCV too.It will be a LONG and painful day, but I hopewe'll be able to come out of it with more certaintyabout my (seronegative) MG status.Carly
- I'd like to welcome you here. I've been mostly OFF the board in the last few weeks, so I've missed some introductions and such.I just want you to know we are glad you are here. This group is a wonderful haven for us MGers. Looking forward to...
- MG (or my POTS) has played foul on my GI motility.I know some of you have this issue too. I'm trying to figure outHOW to really manage this. The MD told me: Small frequent meals Eat mostly soft/liquid foods Low/No fiber Take Miralax and Colace...
- Any drug except tacrolimus for the MG. I hear so many of you on Cellcept and other drugs.Do you have to take those with steroids?I can't do steroids due to intracranial hypertension, so maybethat is why he hasn't offered me the other drugs?Neuro...
- I'm supposed to do a liquid/soft diet. My gastric emptying is lousy and I am choking more often. So GI dr. put me on low fiber diet suggesting liquid only if I can tolerate that best. I'm not in the market for expensive shakesand can't do high...
- I know a lot of us have swallowing problems. Check!Do you also suffer from chronic constipation? I havehad issues for many years and it's worsening. I was wondering what YOU do to alleviate this? I'm on Miralax and Colaceand trying to eat a lot...
- I do and it's tough. It's put me in the hospital recently. When I get sick, constipated (that's to gastric dysmotility), etc... my heart rate soars.The MG is worse when I'm sick when anything, of course. It's tough sometimes. I never know which one...
- My husband and I usually go up north in the summer for a few weeks.Since my diagnosis and progression, I am leery of going that far from home now. The house is at least 30 minutes from a basic hospital. There's NO air conditioning at the house...