[Glen Ackermann]

Thanks again to everyone for sharing their experiences with IVIG. I didn’t really have any preparation for what to expect. When I had my IVIG, it was early in the morning, around 8 am. I was not advised to hydrate. They gave me Benadryl and Tylenol. Mornings seem to be when I am most dehydrated. Next time, I will schedule it for the afternoons after I have hydrated myself well. The one thing that I didn’t mention was how much trouble they had with getting a good stick in my hands/arm. On the first day, my plan was to have the port removed so I could try to work. It took several attempts to get a good vein or whatever and the same thing happened the second day. The second day I had them leave the port in. I had nine bruises on my hands and arms from the infusion attempts. The whole experience was one that I am not anxious to repeat, but I think I will be better prepared next time. I will plan on not working during the infusion period and the first port will remain in for the duration.

[Glen Ackermann]

Thanks to everyone who shared their experiences with IVIG. I did receive Benadryl and Tylenol before each infusion.

[Glen Ackermann]

Here is what has worked for me. First thing is to identify other things that trigger a bowel movement. For me, excessive alcohol consumption which for the purpose of discussing diarrhea is more than one beer or drink for me. I now limit my drinking to either a Friday or Saturday night. Coffee can be an issue. Spicy food. I like my food HOT. Once again I prefer to indulge when I feel reasonably sure that I will have quick and unfettered access to a restroom. I always take my Mestinon immediately after a meal. Milk and ice cream have been greatly reduced to prevent lactose intolerance. In short, avoid the things that sometimes makes you go to the bathroom because it is only worse when you take Mestinon. I have found that increasing my fiber intake has helped. I usually try to eat an apple with my lunch. Fiber helps to bulk up and stabilize the stool and seems to stabilize the digestive track. As time has gone on, the diarrhea has become less and less. I hope my tips might help you or someone else. Good Luck.

[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.