Questions you have about coping with MG symptom progression

[Barbara E.]

I’m in my early 70s and widowed, so I’m living with MG alone. In spite of persistent ptosis affecting my vision, I feel that constant, extreme fatigue is my greatest obstacle. I’m use a CPAP machine and take 3 different prescribed stimulants with little effect. What else can I consider to hopefully help?

[Frank]

Dear Barbara, I’m so sorry you are having to deal with this, especially alone.

Bottom line: communicate, communicate with your neurologist.

What works for me is having a wonderful neurologist and being as proactive as I can be. I’m in the same age range and we really weren’t (or at least I wasn’t) raised to be self-educated or proactive concerning our/my health. That has changed for me with my diagnosis. I did a lot of research about MG its and my symptoms and learned to talk to and ask questions to my neurologist (who is fabulous). If your neuro isn’t willing to communicate with you, answer your questions/concerns, and help you reach the health level you want, please insist on a new one. I am very lucky with mine as I live in Lexington KY and the University of KY has a teaching/research hospital and she is very knowledgeable about MG and a very caring and open doctor.

Check to see if there is a health portal (that’s what UK calls it) that you can connect to online and check your test results, appointment notes, and send messages to your health care team. IF so, please use it.

Last year my neuro asked me if I was happy with the status of my condition and said she wanted to work with me so that I was at a level of health I was happy with. WOW! I have been letting her know when I’m having issues and am not happy with my condition and she is always responsive and willing to tweak my meds and work with me.

Fatigue is a big issue for me. I have to guess about hat will be too much for me because the fatigue/tiredness usually doesn’t hit me for hours or even the next day. So, it’s a learn-by-experience thing. I’m guessing that being by yourself you have to do much more than I have to get by with my two family members living with me who have picked most of my physical work.

Let your doc know what’s going on, let them know you are not happy with your condition and ask what you can do to get relief. There are other drugs available and perhaps just increasing some of your dosages may help.

Lots of loving concern and healing energy to you!

Frank

[Cintha]

First of all, I’m very perturbed about the use of the word “progressive “.

Myasthenia is not a progressive illness but rather a fluctuating one. It concerns me that this word was used. Because it’s not progressive, one has great hope that the new treatments and medications will make living a life without symptoms possible. I’m in a holding pattern waiting for Kyverna’s recruitment of patients for a Phase 2 clinical trial for Car T cell therapy. It’s cutting edge and can certainly help patients like myself who have refectory gMG.

[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.