Reply To: Very new to my diagnosis. A bit confused and would like anyone to weigh in.

[Community Member]

Howdy –

– Is MG a cumulative disorder?

I guess that I am considered “Stable” after 2+ years of treatment.  I have gMG that started with Double Vision (DV) and was first realized while my wife and I were driving our 42′ Diesel Pusher up route 17 North out of Tucson to Cottonwood.

After 2 ER visits and 2 incorrect diagnoses, I saw an Ophthalmologist that first uttered Myasthenia Gravis.  Four months later gMG was Officially diagnosed after tests.  My Neuro said I should be grateful that I do not have ALS.

Now I take Mestinon/Pyridostigmine, Imuran, Prednisdone and monthly IVIGs.

I always have some DV.  Most times I have come to live with it.  For two years I did not drive but got my license back a few months ago.

The biggest challenge I face, almost daily, is not what I can do but rather, what I can not do.  Today my oldest Grandson wanted to get me an airplane diorama, but was advised by my Wife and Daughter that due to my DV and loss of fine muscle control in my hands, that it probably would not be a great idea.

My latest idea, to save water, was to install a Drip Irrigation system in our flowering shrub gardens.  I have used Drip Irrigation for many years and have always been able to do the job myself.  Today due to loss of muscle strength, I was able to complete in one day what it used to take me in one or two hours.  Very frequent rests.  Sweating, heart pounding, breathing heavily and fatigue would cause me to sit for 10 mins or so then back to it.  From there I started to get frustrated and stressed.  I decided that I should put everything away and do some more tomorrow.

So I don’t know if I am “Stable” or not.  I do know, if I over work or get over stressed my symptoms get worse.  My warning signs are tremors and speech issues.

Our life has changed dramatically.  We are adjusting to life with MG.

– Is there any anecdotal information that improvements in lifestyle can help control the spread/severity of the disease?  There are those that make great lifestyle changes in terms of diet that probably does help.  Others use some type of EMS to stimulate their muscles.  We went from a low carb. low sugar to almost Vegan and so no noticeable change.  So now we try to not eat carbs and sugar and eat lots of fruits and veggies.

I have been sober for almost 20 years so I have no idea how alcohol might effect me.  A bit of THC does help to “Brighten”

The last time I got severe double DV I increased my Prednisone from 10mg/day to 20.  Called my Neuro and he suggested I stay there for 2 weeks then taper back down to 10.

Many can feel the effects of Mestinon after they take it for me, I can not.  I would like to stop it for a while and see what happens but my Neuro says no.

Guess I’ve rambled on long enough.

Good luck –

Scott