[Glen Ackermann]

Barbara, Frank and Cintha,

Thank you for sharing. In regards to whether MG is progressive or not might depend on where you are with your journey. When a person begins to experience new symptoms, it is a progression and when someone experiences the same symptoms that come and go then it is fluctuating. I think it kind of depends on where you are on the journey. I was diagnosed 14 months ago with MG with ACH antibodies. My first symptom was difficulty chewing and becoming tired while chewing. I haven’t had that difficulty for over a year. My primary medication has been low dose prednisone and Mestinon. Over the last six months or so, I have really noticed an increase in fatigue and a loss of energy. Sometimes when doing a lot of walking, I feel like I am dragging my legs they feel so tired. Sometimes I feel like I am walking like a drunk person when the fatigue sets in. We have lots of wind on the prairie, and 3 Saturdays ago we had really high winds and part of my privacy fence blew down. I live in the city and I have dogs and chickens so repairing the fence was a big priority. The weekend after the fence blew down (last weekend), I pulled the broken fence post from the ground with a Hi-Lift farm jack and set the new post with cement and then hung the pickets. We were in a rush because we had a storm coming and we needed that cement to set before the storm. Anyhow, to make a long story short, the next day, Monday, I got up and prepped myself for work but I was so physically and mentally fatigued that I called in sick for the first time due to my MG symptoms. I went back to bed and slept for 3 hours. I didn’t even begin to start feeling normal until about 7 pm Monday night and at this point I still feel tired and weak even though I went to work Tuesday through Friday. They say timing is everything and luckily, I had my 6 month appointment with my Neurologist on Tuesday. Monday morning I will begin IVIG treatment for the first time and continue for 5 days. For me, my symptoms have progressed from what I experienced when I was first diagnosed. Whether the disease has progressed or not is debatable , but to mind, those bad antibodies are still working and doing their damage. More damage leads to more severe symptoms. That’s progression to me.

[Glen Ackermann]

I was diagnosed with MG a year ago and about 6 months ago I began experiencing back pain. Turns out I have a central stenosis between my L4 and L5 vertebra. I think it is possible that MG has caused some core muscle weakness which uncovered my stenosis. As far as your neck pain, I think it is not uncommon. Some People with MG have a difficulty holding their head up due to muscle weakness in their necks. It is possible that muscle weakness in your neck is causing your neck pain. You should discuss these issues with your neurologist.