[Norman Ross]

<div>I have had gMG since 2017, and the experience has been interesting. Some days I feel and act almost like a normal person, but other days are horrible, where I feel achy and can barely move. Nuts. Over these past six years, I have varied the amount of daily 60mg Pyridostigmine from 3 to 5 tables per day,</div><div>

and now settled on usually 3 tablets between 6:00am and 3:00pm. Occasionally, I also take 1 500mg Mycophenolate if I feel that is needed to “make my day”! Considering that all of the medications do cause undesirable side effects, I eat healthy and minimize the use of medicines, but do take enough to keep me alive for now. Note that I avoid meds late in the day, as that inspires an excessive amount of Acetylcholine to enter certain muscles (usually legs) and cause involuntary muscle contractions (cramps) resulting in excruciating pain that is only relieved by standing up to involve the brain/nerve interaction is the muscle contraction/relaxation process. Oh my. Since each MG patient has a somewhat unique experience, each patient may need to work with more thatn one neurologist to discover what works best. Hope this helps somebody out there.

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[Norman Ross]

So sorry to hear of your negative reaction to Pyridostigmine.  I have had gMG for over six years.  For the first four years I was taking 60mg Pyridostigmine @  3 to 4 per day.  The nighttime leg cramps were horrible.  I modified my medication to 2 Pyridostigmine per day (morning and noon), and 500mg Mycophenolate @  1 per day (5:00pm).  The leg cramps disappeared.  Why?  When I am resting or sleeping and there is too much Pyridostigmine in my system, that enables too much acetylcholine to penetrate muscle receptors and cause certain muscles to contract involuntarily.  This bypasses the intricate brain, nerve, acetylcholine balance so the muscles get a flood of messages to contract, but do not get corresponding messages to relax.  Bummer!!  I buy these meds via goodrx.com for the best prices.  I hope that this info is helpful.

[Norman Ross]

I have had gMG since 2017.  The first year or so I was taking 60mg pyridostigmine 4 times per day.  The frequent night time leg and foot cramps were horrible, and I had to stand up to relieve the tension in my muscles.  Then, I read a post on this forum that was written by a fellow who converted to cellcept.  Now, I take 2 pyridostigmine before noon, and 2 cellcept (500mg) in the afternoon.  This combination works wonders for me.  A daily rest/nap period helps too.  Since each patient is unique, some experimentation regarding medication and performance of daily activities is probably necessary to determine “what is best for you”.  Yes, as Charlie Harper would say, “I understand”.

[Norman Ross]

In 1984 I accidently treated myself with chlordane by brief gusty winds that caused the chemical to contact my skin.  I soon realized that the chemical was damaging my nervous system, and took an extensive cool shower to alleviate the pain, but to no avail.  A trip to the emergency room was necessary.  The treatment was cool compresses over the affected area and codeine to relieve the pain.  After two days of treatment with the codeine, I seemed to be OK.  Years passed.  In 2016 I was diagnosed with Bell’s Palsy.  That was treated with prednisone, and lasted about two weeks.  In late 2017, I was diagnosed with Myasthenia Gravis (gMG).  Could the chlordane be the cause of an imbalance in my antibodies to manifest such maladies as the Bell’s Palsy and Myasthenia Gravis?  Highly suspect!!

On the theme of “research” regarding MG, I want to note two more issues.

1.)  Today, I read an article on Yahoo regarding the retraining of our immune system to not destroy certain cells that are beneficial to us.  Is this a key to a novel way to cure MG? A link to this news article is here:  https://www.yahoo.com/news/reverse-vaccination-technique-mice-suggests-133457275.html

2.)  I have searched for, but not found a meaningful database that can be searched for clues for the causes and possible prevention, causes, treatments, and possible cures for MG.  I have seen many “pockets” of information regarding MG, mostly “feel good” stuff, but no comprehensive investigation and publication that will lead to a definite cure for MG.  If anyone at Myasthenia Gravis News is aware of a serious collaboration regarding MG research, I would like to know.

Thank you,