Robert Powers

I Started Ultomaris in February.  I like every 8 weeks instead of every other week.  I thought I had a rash develop but I was able to rule out the Ultomaris!  I see an improvement in major muscle strength in arms & legs and I am hoping it is permanent with Ultomaris!  Otherwise no difference than Solaris!  My schedule likes this better!  Time…[Read more]

Positive attitude, hard worker, adventurer, love the outdoors, More hobbies than time!  Try to not let MG get in the way…even though it does put limits on me…Ultimiris has freed me up due to fewer infusions vs, IVIG and Soliris.

However I am too busy with other family medical issues to let MG get in the way of my responsibilities.

I guess I have been fortunate.  My excellent Dr’s have treated my MG very aggressively…Prescribing Pyridostigmine 240 MG, azthroziaprine and IVIG biweekly, then 3x every two weeks for over 6 years!  My symptoms were minimized except for muscle weakness (somewhat improved) minor ocular symptoms.  NO apparent adverse side effects.  I was pre…[Read more]

Having been very active with above average strength, as a once varsity wrestler, competitive weight lifter and tactical mountain climbing instructor, and more,  having MG muscle weakness in legs, arms, back, etc has been frustrating, to say the least!   I was first told that my weakness came with age….but I argued that something else was at pl…[Read more]

I receive Soliris infusions every other week…it is MUCH better than 4 hours of IVIG 8 times a month!   Results about the same but I have my 8 days per month of my life back!

Just a simple question…does MG cause Erectile disfunction?  All testing has shown no other issues.  Doctors “don’t know, but possibly”…it is a muscle issue.  Anyone else?  Pills don’t work.

I had retired once…and was ready to begin my second ideal but lower paying career as a fishing, boating and hunting guide.  Canoeing, Kayaking, etc…are more difficult now!

MG put a damper on that due to loss of major muscle strength, medical infusion schedule…etc.  I was going to split my seasons between Maine and Florida and had c…[Read more]

Norm

Nice to have the luxury of time, now you are “retired”.  There is still a lot I have to do with homes, farm, family, etc.   Much of which cannot be put off “days”.  Usually the only things to be put off are the relaxing/recreational activities that are most valuable and recommended by doctors!  My unique factor, to complicate things is that…[Read more]

My MG symptoms seem mild compared to many people…but I was aggressively being treated by excellent Drs.   The weakness in my upper legs, arms, stumbling are now my major complaints.  Pain in my upper arms and shoulders are now late in the day and treated with Tylenol and a soak in the hot tub.  When pain is bad and I need to sleep I can used “tr…[Read more]

We have to force ourselves to do things even when we do not want to.  Not always easy because all of life’s other issues seem to come into play.

Depression is always a factor, when I can’t do all of the things that I used to enjoy!

I am not certain about some go the “chemical” exposures stated here can relate to causing MG.  Possible sure…but I believe that anything is possible.  Usually, exposure and effected of some of the chemicals mentioned would have a closer time correlation.

HOWEVER, I do believe that severe, long term, emotional and physical stresses can t…[Read more]

Yeah, strength of arms & legs was greatly affected.  I was not a weakling and very active.  The muscle weakness was originally blamed on my age, but I had my doubts.  I walk with a cane only due to strength and balance issues.  I had the whole suite of MG symptoms but most mild.  However, Solaris seems to have improved my strength in arms and legs…[Read more]

I was having some speech difficulty, Left eye weakness, major weakness in arms & legs and mild double vision.  I thought allergies…so went to eye doctor who ruled out eye issues but he suggested MG, which I had never heard of.  A couple of days later, my left eye drooped/closed while I was backing out of my driveway and I hit a tree!  My da…[Read more]