[MikeS]

I think it’s obvious from all the comments that mestinon enhances muscle cramps.  I never used to get them until I started mestinon around 2 years ago.  I get them primarily in my feet and usually at night.

[MikeS]

Diagnosed 2 years ago.

Most severe symptoms:  1st flare-up was ptosis and diplopia; 2nd was slurring; 3rd and subsequent were/are slurring and swallowing.  It seems to have settled on (unfortunately) swallowing/slurring going forward, with less severe symptoms attached (e.g., face muscles such as around eyes and mouth, eyelids, slight diplopia at edge of visual field, reduced stamina).  It’s the swallowing that put me in the hospital for the first time (last month).

[MikeS]

When my chewing and swallowing are at their worst, I’ve found bananas to be the easiest food to eat.  Otherwise, I defer to nutrition drinks like Boost and Ugain.  I’m looking forward to hearing what suggestions others may have.

[MikeS]

For my most recent flare-ups swallowing was my main culprit.  I also have had phlegm/mucous issues in my throat and at the back of my tongue, which made swallowing the much-needed mestinon/prednisone combo very difficult.  I’m still recovering and am progressing well.  However, when I could barely swallow I found bananas to be the most edible/swallowable food, otherwise just protein/veg drinks like Boost and Ugain.  Eventually I was losing too much weight too quickly and got admitted for IVIg infusions for the first time.

[MikeS]

I’d be surprised if it turns out that MG can cause hearing loss.  Since MG only affects voluntary muscles, and I don’t know of any voluntary musculature in the ears, it seems reasonable to suspect an MG med, or else another condition or disease.

Mike Stabile

[MikeS]

I just wanted to be clear about my previous comment… I’m referring to not taking Mg ONLY during a flare-up. not while in remission.

[MikeS]

Today I’m in the middle of my first 5-day IVIG infusion series and I hadn’t really eaten much of anything for about 2 weeks because of my swallowing difficulties. Upon admission they did bloodwork and my Magnesium was 1.6 so the admitting doc ordered Magnesium, of course. I am so fortunate that a couple of months ago I just happened to have read a comment by someone on this website that mentioned about not taking Mg for anything (like, for example, leg cramps). I looked around here and at other MG forum sites, did some more formal research and figured there was something about this so I did something I’ve never done in my life and refused the order. While an inpatient I dug around some more and, voila, Mg inhibits ACh production! I had to educate my nurses and the ordering MD and they soon realized what might have otherwise happened (exacerbate my flare-up or cause an MG crisis). My advice is to learn as much as you can about MG and known triggers because about 99% of the medical community know very little about MG, and there may be times that you’ll have to stand up and be strong and insistent and have some reference(s) handy to back up your decision. This website might have saved my life.

[MikeS]

I’m on 180mg ER mestinon which I take right before bedtime (as instructed). The side effects have continued to mostly be GI cramping, bloating, mild nausea and mild diarrhea.  To stimulate my appetite (i.e. supress the nausea) I use cannabis, otherwise I would lose weight.

[MikeS]

I take it (the 180mg XR).  I take it at the same time before bed each evening.  That’s all the mestinon I’m taking right now.  I also take 10 MG prednisone daily in the a.m.  It does give me some leg muscle cramping at night, some diarrhea in the morning and stomach cramps at any time during the day.

[MikeS]

Last year I started Mestinon and also concurrently started getting leg cramps. I didn’t realize that they might be related until I read your message.  I get them at night in bed usually before falling asleep.  I can also initiate them by extending or flexing my foot, and surprisingly my toes, too.  I’ve been trying Magnesium pills for a couple of months (they are supposed to relieve muscle cramps, I’ve been informed) but no relief so far.  I’m interested to see other responses to your question.  Thanks!

Mike

[MikeS]

I was diagnosed about 1 year ago (1st episode was just ptosis about two years ago) and have had two additional episodes (mostly facial muscles involved, i.e. droopy eyelid, tongue, etc.) since the first. On my third episode last December, the neurologist put me on 20 mg prednisone plus 180 mg timed-release Mestinon. All my symptoms (tongue, swallowing, eyelid, other facial muscles) disappeared after a couple of days. Since then I’ve been slowly weaned off the prednisone and am now at 10 mg/day.

When I started at 20 mg I had to also take Bactrim daily until the pred was reduced to 15 mg/day. The combo of 20 mg pred and Bactrim was not kind to my body, particularly my GI system. I don’t like the current side effects of the pred 10 mg dose, but if it prevents another episode, I’m all in.

BTW, on 20 mg pred for one month, all my arthritis symptoms (esp. hands, knees and back) greatly decreased and my joints hadn’t felt that good in many years! Unfortunately, as the pred dose has decreased, the arthritis has returned to “normal”. So I do have one good thing to look forward to (besides relief of MG symptoms) when I get another episode and my pred dose gets bumped back up to 20 or more.

Good luck with your treatment and doctors. Mike

[MikeS]

I got my fourth shot (2nd booster) this week.  All four were Moderna.  My 1st booster was 4 months ago in mid November.  Except for one evening of fatigue after the first shot a year ago, in all cases my only post-shot symptoms have been shot-site pain and swelling.

I had gone to see an MD about getting my hernia fixed and asked on the side if they (Kaiser) were letting immunocompromised patients get a 2nd booster, as the CDC recommends.  They basically said, “Sure, why not.”   That was unexpected since Kaiser had not ever suggested to me, considering my MG dx., about getting the 2nd booster.

I now feel that I’m as vaccinated as a person can be, but will still continue wearing my N95 masks at ALL indoor locations except my home.  I also avoid all outdoor events with crowds and all modes of motor transportation except my own car.  The BA.2 variant is now surging here in So. California, having doubled in case numbers in just the past week.  Be careful out there!

Mike

[MikeS]

Has anyone come across any scientific suggestions about what physiological mechanisms might be causing MG exacerbation from heat?  Our inevitable future of worsening heat waves looks to be a growing problem for us MGers.

Mike

[MikeS]

Hi, Chris. I’m 68 y/o. My MG first manifested two years ago with diplopia. Took a while (approx 1 year) for neurologist to reach MG diagnosis. No treatment or meds given. My second event was last year with diplopia, ptosis, and swallowing, chewing, and tongue issues. 60mg Mestinon was prescribed, followed later by 180mg extended-release. A few months ago I had my third episode and was put on 10mg prednisone. One month ago I was put on a 1-month regimen of 20mg prednisone and Bactrim. Now all my symptoms are in remission and I feel good, especially my stamina. I know I’ll have subsequent events (I’m a realist) and it looks right now like low-dose prednisone will be my symptom-reliever going forward. I realize now that “Myasthenia Gravis” is more of a catch-phrase for many different anomalies that affect acetylcholine receptors, as evidenced by the wide variations in synptoms and their intensities. (But what do I know…)
Mike

[MikeS]

I’m taking 240mg pyridostagmine and have the equivalent of 2-3 beers’ alcohol per day. So far I haven’t seen a correlation between when and how much I drink and change in my usual MG symptoms.

[MikeS]

I had my first MG episode 2 years ago about 2 days after receiving a cortisone shot and 4 days after getting Shingrix vaccine (shots were 2 days apart). I’m reasonably confident that this shot combination was the trigger.

[MikeS]

Hi, Jodi. I had my first MG episode last year (a couple of weeks before Covid appeared here in California), manifested by just diplopia. At the time a neurologist couldn’t pin down the MG diagnosis due to only the single symptom and no confirming test results. This year, before my 2nd and more extreme event (tongue, swallowing, drooping eyelid, facial muscle weakness, slurred speech, etc.) the neurologist had me do more tests and finally got enough evidence to label me with MG. So we weren’t surprised when the second event started. I’m fortunate to not have any other debilitating health issues. My other main problems are reflux, nasal allergies, life-long anxiety disorder, arthritis and bulging spinal disks. Let me just say, not knowing when the next MG event will occur and how serious it will be is not helpful when you have to deal with anxiety in general. Has anyone else seen their diagnosed anxiety disorder worsen with MG, and, if so, have you found any way to mitigate it? Thanks. Mike

[MikeS]

Hi, Michelle. I had my first instance of droopy left eyelid a few months ago. Initially I would hold my eyelid up, while driving, with my left fingers. That got old and useless quickly, even on short drives. I got out the scotch tape and tried taping my eyelid to my forehead. That seemed to work much better. I would place the lower end of the tape just below my left eyebrow, pulling up as needed before attaching the top end to my forehead. I used this technique until the drooping decreased to the point that I didn’t need it (around 3-4 weeks later). Besides driving, I also would tape up my eye for TV viewing. The scotch tape is hard to see, so it doesn’t look so bad in public. If I went shopping I would wear a baseball-style hat to cover my forehead and pull it down slightly to reduce visibility of my raised left eyebrow. I was diagnosed only recently and came up with this on my own, so if there are other better solutions for drooping eyelids, I’d sure like to hear other peoples’ ideas. Thanks! Mike

[MikeS]

Wow, I’m really impressed that you have no  symptoms from either the prednisone or the Mestinon.  You are really lucky.  Currently I am on 5mg Prednisone and 180 mg Mestinon ER (extended release).  I take the prednisone in the a.m. and the Mestinon a little while before bedtime (around 7 p.m.).  The prednisone causes increased appetite (with weight gain), acne in various body sites, and some other minor issues.  The Mestinon causes significant G.I. problems, especially in the morning (diarrhea, constipation, etc.), muscle cramping and twitching, and night sweats.  The good news is that I’m currently (for the past 4 months) in remission for my MG issues, so the trade-off is definitely worth it.  Again, you are really lucky not to have any symptoms.  Good luck!

Mike

[MikeS]

I have Kaiser, Southern California.  My Neurologist so far has been considerate and helpful, but her experience w/ MG seems quite limited.  Does anyone have/know a So Cal Kaiser MD who is experienced in MG treatment?  If so, please tell me their name so I can look them up.  Thank you!  Mike

[MikeS]

Why did you decide on Evusheld for your 4th?  Did your MD recommend it?  Mike

[MikeS]

I recommend finding/joining a local MG support group and seeing if any members have recommendations for competent Neurologists in your area.

[MikeS]

My Neurologist said when the prednisone dose is at 20mg or higher each day, the hit on the immune system’s functions can be partially mitigated with antibiotics.  I don’t know yet why Bactrim in particular is prescribed (in my case, at least).

I just completed a 20mg daily prednisone regimen (for 4 weeks due to my recent MG episode) which included Bactrim.  The Bactrim was stopped last week when my daily prednisone was changed from 20 to a daily average of 15 mg, so I therefore assumed that 20 mg was the minimum level for taking Bactrim.  I will have to take 15 mg for 4 weeks before getting dropped t0 10 mg for however long is necessary.  I’ve responded really well to prednisone (all MG symptoms currently in remission!) but know that it will eventually take a toll on my body, so I hope I can come off completely (until my next major episode, of course).  Good luck!

[MikeS]

Sharon:  Thank you so much!  I reviewed Lids By Design and decided to give it a try during my next ptosis eposode.  I found a sample pack on sale on Amazon, and figured that would help me narrow down the size I would need going forward.  Thanks, again!  Mike