[Kenneth Berg]

Sorry you are having these issues. Tested positive for antibodies, displaying many of the sympotoms – YOU need another neurologist.  I exhibited many of the same symptoms (eyelids, muscle weakness, etc) and once on a regimen that started with IVIG – Intravenous immunoglobulin) and high doses of prednisone, mestinon and mycophenolate, I am now living my best life with 4 ~ 60 mg tabs of mycophenolate, 2.5 mg of prednisone and 4 ~ 60 mg tabs of mestinon.  YOU need a neurologist who can treat you, not just tell you you have it.  GOOD LUCK

 

[Kenneth Berg]

I’m 6 years in and under control with 2.5 mg prednisone, CellCept and Pyridostigmine.  One thing I must caution you about, your drinking.  I thought I was doing OK as a moderate to light drinker. Then one day, before a cruise, having a couple of margaritas to celebrate, I started losing mobility. by the day of the cruise, I was in a wheelchair. I didn’t realize it was the drinking.  On the cruise I couldn’t even swallow my medication. I was a real mess.  Then it hit me – when I first learned of my MG, the doctor told me drinking, if any should be light.  I immediately stopped drinking on the cruise (although I never had a drink, maybe 1 or 2,  other than taking sips of my wife’s). By the end of the cruise, I could swallow, walk OK and used the wheelchair very little.

You’re new to MG, my interaction with alcohol may be different than others, but I felt I should warn you.  No sense ending up in a hospital for something you CAN control.  Good luck.

 

[Kenneth Berg]

Day 1 – Cipro 500 mg (for diveticulitis) – diahrea, listlessness, rash on legs – stopped

Day 4 Amoxicillin/Clavulanate (for diverticulitis) gave me diahrea, listlessness, rash on legs stopped on day 6

Switched to Bactrim and metronidazole.  No problems  (just recently took this again for a dog bite). Also took sulfamethoxaxole during dog bit incident – no problem

Azithromycin landed me in ICU with MG exacerbation.

While on a cruise, given 2 gm ceftriaxone intervenously – no problen,.  Ship doctor also told ne that Ampicillin also shows low risk.

Definitely tough to find ones that don’t affect MG. Good luck.

 

 

 

[Kenneth Berg]

Like Tim, I take a lot of supplements.  The one required by my doctor for my MG is 1200 mg Calcium every day.

[Kenneth Berg]

“I wish I could, but I have an immune system issue and it has a detrimental effect on me”.  “No thank you” also works.  Plenty of people today don’t drink or no longer drink.

 

 

 

[Kenneth Berg]

I have a similar story, but the inept neurologist was in the US, Dallas area (I guess they can be incompetent anywhere).  In 2016, my left eye started to droop.  No other symptoms, just a droopy eyelid.  I went to an eye surgeon and she discussed a procedure to pull the lid up.  Day of surgery, prepped and laying on the operating table. She said “Wait, your eye looks different – it’s drooping more.  I can’t do the surgery. I want you to go to a neurologist.  I think it may be myasthenia gravis.”  After a couple of visits, a CT Scan and bloodwork for acetylcholine receptor binding and other MG indicators, he pronounced me clear to have the eye surgery. The eyelid was tucked up.  On my 1 week f/u visit, the eye was drooping again and she performed a tuck in office. No luck as drooping continued.

Back to the neurologist who reviewed my bloodwork again.  “Well, I guess you do have MG!”.  My  acetylcholine receptor binding number was more than 3 times the limit for MG.  Talked to an attorney, he felt there was no case to pursue.  Doctors get away with being sloppy and we patients (and Medicare) suffer and pay the price.

I do 300 mg of Mestinon and 5 Cellcept a day with 5 mg prednisone. Under control, only feel it when I’m out in the heat being active.

[Kenneth Berg]

Just for information – I have been on mestinon (6/day) and cellcept (5/day) with prednisone (now 5 mg) since 2017. So when I began getting cramps at night several moths ago in my calves, in my toes and in my legs, in my feet, I never gave drug interaction a thought. (Have y’all always had cramping with mestinon/prednison?)

After much research, looking for simple things to try first, I discovered too little water and fluids during the day to be the issue. I drink plenty of fluids now during the day and my night cramping has stopped.

[Kenneth Berg]

I, too, had a setback, more like an exacerbation, that lead to worse symptoms than when I started. Including the ones you mentioned, I couldn’t walk but for short distances, little strength and ended up using a wheel chair on a cruise! The culprit was ALCOHOL, liquor. I no longer drink and I’m as good as ever. I do 5 ~ Pyridostigmine, 5 CellCept and 5 mg of prednisone a day. The only thing that still drains me is hot weather so I try to minimize direct Texas sun.

[Kenneth Berg]

I seem to recall the mestinon instructions said do not chew pill.

[Kenneth Berg]

Jonathan A,

Is remission a clinical diagnosis? Is it something confirmed with blood tests and a decreases in AChr inhibitors? Or are you just feeling good on your meds?

 

[Kenneth Berg]

I can tell you melatonin was bad with my G> I was a zombie the whole next day (Only took 1 night) Thanks for thee trazadone suggestion.

[Kenneth Berg]

Funny, I was drinking moderately no problem. Then one evening before a cruise, went out to celebrate, had a margarita and by next morning, was very weak on way to airport, used wheelchair, etc. Not realizing it was the alcohol, because I had been drinking moderately, I drank a little on the cruise and it really got worse. Couldn’t swallow, lift, walk much. Then it snapped it must have been the alcohol. Haven’t had a drink since and doing very well. Stay healthy!!