[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 will tell!

[Robert Powers]

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.

[Robert Powers]

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 prescribed prednizone for another issue but that turned into a nightmare, but did solve the vesicular inflamation…but my blood sugar skyrocketed…whereas I never had sugar issues before!  Eliminating prednizone reduced blood sugar to near normal.

Now I continue the pills but have replaced IVIG with new drug Ultomiris infusions only once every 6 weeks…just started so time will tell…

[Robert Powers]

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 play…turned out to be MG…

However, I will be starting a new drug to upgrade Soliris…with the promise of improved strength.  Can only hope!

[Robert Powers]

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!

[Robert Powers]

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.

[Robert Powers]

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 completed most of the inshore boat “captain” requirements in Florida.

Oh well, maybe in my next life! (;-)

[Robert Powers]

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 “tramadol”…but getting prescription is not easy.

The results of the weakness in legs & arms makes it difficult to get in and out of canoe or kayak.   I live on the water and try to live to enjoy it.  My balance is off and I do use a cane.  I was doing IVIG for several years…which seemed to help reduce the weakness issue…when I was getting IVIG 8x a month!

Now I am on Solaris every 2 weeks….(much better for time management) But now leg and arm weakness and some fatigue has returned to muscle groups.  Now sure if related to change in infusion changes…only been a couple of months.

I have not yet had followup with neurologists for that.

However, the good news is that my vision has improved significantly, so no complaint there!   No double vision!  Mouth chewing, swallowing and talking has improved.

[Robert Powers]

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!

[Robert Powers]

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 trigger MG and other autoimmune diseases like MG!  I have discussed these possibilities with psychologists, Psychiatrists, and Neurologists and there is some agreement that these factors must be considered!  There is much variation in MG, symptoms, severity, etc.

Some of the chemicals mentioned in this forum can be associated with activities that also have chronic pain and psychological stresses!   I have some pre-med background and experiences with people, etc…and it makes much sense…but agencies and many doctors will not even discuss it!

[Robert Powers]

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 daughter first thought I was having a stroke, called my PCP who told me to go to emergency room.   I was admitted to hospital, ruled out stroke and Bells Paulsy…but on third day a neurologist ran diagnostic tests for MG and confirmed it.  A rare disease in my area!

They began mestinon and athroziaprine which helped improve things then began IVIG which had great results…symptoms became tolerable…that was 5 years ago and now I have just started solaris to replace IVIG!  I feel lucky to have been diagnosed early and have been treated aggressively…minimizing adverse effects of MG.

[Robert Powers]

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 my wife has moderate Alzheimers, which keeps me more than busy and stressed out.  My doctors say the extra stress can contribute to MG symptoms!  We are all different!

[Robert Powers]

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…but too early to tell.