[Kent]

I did …. emphasis on past tense. I’m replying to this to encourage people to advocate for themselves. Trust your instincts. Examples … my leg weakness was due to being dehydrated; my jaw muscles soreness was face swelling due to prednisone. And this was coming from a neurologist! I’m not an MD so maybe these were contributing factors but not the root cause I changed neurologists. I found one who listens and respects my concerns. You know your body better than anyone else. I wish everyone the best Find a neurologist that works with you.

[Kent]

I’m not pushing any particular brand .. just commenting. I drive a Hyundai Tucson Limited edition. It has sensors to alert me to blind spots, it has the ability to “drive itself” on the interstate which helps with arm fatigue using cruise control and following distance spacing between cars. The computer “keeps it between the lines” and can turn the front wheels when the road curves to the left or right. The vehicle is easy in and out. Just stay alert.

I’m sure there are other cars with similar features. Just mentioning what my car has. It helps prevent fatigue on road trips. For out of town trips to the neurologist, I get around 26 mpg (combined city and highway)

[Kent]

I have balance issues as well. Mostly when standing from a siting position. Humor helps …. my brother and I were at a restaurant and, in between courses I got up to go to the restroom. Of course I was unsteady on my feet for the first few steps. The diners next to us asked my brother if I was drunk. He replied that I was a little impaired and I was his ride home! Levity helps every difficult moment.

[Kent]

Your experiences are not unique in dealing with your neurologist. My neurologist said my incontinence was not related to the myasthenia. My urologist says it is. Realizing the uninary sphincter is a voluntary muscle it makes sense that it is affected by the disease. The most important thing is, what are you experiencing? Now, how to deal with it? Diapers (I know, not a name we want to use) is the easiest solution. I wear two… a cheaper one on the inside and a Depends on the outside. Easy to go into the restroom stall and “rip off” the inside one and bingo… you have a fresh diaper without removing shoes and slacks/jeans in a public restroom. A more permanent solution is an Artificial Urinary Sphincter. An internal, surgically implanted device. Google it AND talk to your urologist. Granted surgery has risks for us but, worth a consideration. Good luck.

[Kent]

This is a great forum to share. I find that neurologists seem to dismiss some of our symptoms that do not fit their textbook learned symptoms of MG. It was good to hear that others have the problem of general fatigue and sleepiness. I find that I’m good every other day for house cleaning, laundry and the like. I thought it was just laziness setting in but I now understand it a symptom of MG. Thanks for sharing everyone. This is a great community.

[Kent]

I’m reading the posts on this topic and I notice a trend.    Those in the first stage of “grief” which is anger.  Then there are those who live the “glass is half full” attitude towards MG.  No, we can’t do everything we used to do but there are still many activities we can do.  “Monitor and adjust” is the battle cry for all MG patients.  Last comment … live the life you have (to the fullest) not the life you wish you could have.

[Kent]

Wearing a “pirate eye patch” is an addition to my wardrobe.  It certainly helps my vision and ability to drive, and sometimes just walk.  I buy mine from Amazon in bulk and I wear a new one frequently.  I really don’t notice or feel it on my face. Sometimes I even fall asleep in bed at night wearing it.  I do trade from the right eye to the left eye to strengthen the muscles.

[Kent]

On a more extreme (and rarely, thank goodness) level, an infection such as a cold, food poisoning or sinus infection,  I have breathing difficulties that require oxygen.  A more common occurrence of breathing difficulties ( lasting a few minutes with rest helping) occur with walking up stairs, hills or a longer distance than 10-15  feet.  Also hot weather cause muscle weakness overall … including the diaphragm.

[Kent]

I was working in my yard one afternoon…. I experienced sudden onset of double vision.  I called my GP and was told it was likely I was having a stroke.  A trip to the ER followed.  An ophthalmologist noticed drooping eye lids and ordered blood tests which showed antiACH receptors antibodies.  Treatment followed…. and continues.

[Kent]

I am a 72 y/o male with a two year history of MG. I take 180 mg of Pyridostigmine (PB) each day along with 10 mg of prednisone.   When I first started on the PB I had issues with diarrhea… as my body adjusted to the PB the GI problems cleared up.   I’m sorry you are having allergic reactions.  It  be is the oldest, and simplest, of the MG meds.   Best of luck to you.

[Kent]

I am. 72 y/o male with a two year history of MG. I take 180 mg of Pyridostigmine (PB) each day along with 10 mg of prednisone.   When I first started on the PB I had issues with diarrhea… as my body adjusted to the PB the GI problems cleared up.   I’m sorry you are having allergic reactions.  It  be is the oldest, and simplest, of the MG meds.   Best of luck to you.

[Kent]

It would be interesting if there were a study of MG patients to try and determine if there are any common DNA markers amongst us.  Has anyone heard of such a study?

[Kent]

I have never met anyone else with MG.  This forum is the only contact I have with other MG patients.  It is very helpful to read about the problems and solutions that others are experiencing.

[Kent]

My situation was very unusual.  Apparently I had a small stroke at about the same time.  Result was double vision. Looking back on it I was developing fatigue easily.  I was very proactive and scheduled an appointment with an ophthalmologist who recognized the symptoms of MG.  Summary statement …. early diagnosis and quick treatment is making my life much better.  Very happy

[Kent]

Monitor (your condition) and adjust (your activities.)

[Kent]

Paul,   I’m sorry you are not receiving the care you need and deserve.  My advice is head to Mayo Clinic.  You can self refer (no doctor’s referral needed.)  Don’t accept a diagnosis (or lack of) that you don’t have confidence in.

[Kent]

I am retired after 25 years in the US Army.  My second career was a junior high science/math teacher.  After I developed myasthenia I could not keep up anymore … just not enough energy.    Nice to be fully retired.  I told my friends I was tired of being tired.   BTW, the eye patch due to double vision was a hit with the junior high kids.  They thought is was part of a costume.