u/Hopesicka

My mom recently had a MG crisis about 2 weeks ago. After a week in the hospital she got discharged. She is currently on only mestinon (6x60mg) and prednisone (25 mg). She had thymectomy done recently as she had type b2 thymoma and she just started her radiation sessions for some residual microscopic cell left.

She is not any immuno suppressants right now. The plan is to start cellcept and rituximab a week after her radiation is complete

All her other symptoms are manageable even her ocular symptoms are better now, but she can’t chew much these days and has difficulty with her speech mainly after meals or when she continuously speaks it starts to slur. We have tried giving her very soft food (mashed idli, or double boiled rice with dal mixed and mashed to be soft) but it still seems to take too much for her to chew even a couple of times.

She is able to drink fruit juices and eat greek yogurt fairly easily and the cold food seems to help her too. In the mornings a couple of hours before her breakfast she has a boiled egg and she is able to eat that with little difficulty.

I am thinking I should start making pureed soups and porridges like kichdi, oatmeat etc and try those. I am looking for some help with what dishes have helped others here and if there is anything I can do differently

Hello All. I am trying to make sense of my mom’s current MG symptoms. I am still pretty new to the world of MG so the last few months had me learn so much

Some history -
My mom (59) was diagnosed with MG in late 2024 (something she hid from me until a couple of months ago. I live in a different country). She tested ACh-R positive and Musk negative and her antibodies were very borderline at the time. She had mostly ocular symptoms that she could control with a couple of pyridostigmin 60 mg tablets. Later in 2025 she started to having some chewing difficulty especially when eating hard food and she upped her medication and started taking 3 60mg tablets a day.

Earlier in Feb 2026 she wanted to get a knee surgery done and around that time after consulting with a new neurologist and doing some scanning we discovered a tumor in her thymus gland and the doctors immediately scheduled her for thymectomy. There was a lot of discussion on whether it should be an open heart surgery or robotic but eventually we ended up going with robotic as per multiple surgeons’ opinion. During surgery they discovered that the tumor was unencapsulated and it was encasing her phrenic nerve and loosely adhered to her brachiochepalic vein.
The surgery was successful and the tumor was carefully detached from the phrenic nerve (thankfully the nerve was preserved maybe with some irritation or injury). Pathology results came and it was type B2 thymoma. Surgeon suggested she get radiation done to address any remaining residual after she recovers from the surgery. Her chest xray cane out okay - she has elevated left diaphragm because of the phrenic nerve irritation which I am hoping as time progresses will improve. Also has some minimal pleural effusion but no infection in the lungs thankfully from the elevated diaphragm.

For 25 days post op she was doing very well - barely had any MG symptoms (her symptoms were mostly ocular with some chewing issues before anyway). We thought she was in full remission. Before her radiation sessions oncology dept did pet scan and MRI with contrast on the sam day. Mom says she immediately felt like something changed in her body. Her ocular symptoms started to come back and worse. I think she felt the onset of a crisis (her first crisis to date). That week she had 4 radiation sessions and with every passing day her symptoms got worse until she couldn’t speak, swallow or breathe and had a full blown crisis. We admitted her immediately and started a 5 day IVIG course. She stayed in the hospital for about 6 days. On the second day her neurologist put her on her first 20mg prednisone and upped her mestinon to 5 tablets a day. Clearly by then what we thought was mostly ocular has become fully generalized MG

Now it’s been 10 days since her discharge. She feels her worst in the mornings and gets more energy in the afternoons. Her ocular symptoms are the worst and can’t be controlled with mestinon any more. One eye is nearly fully closed most of the day and her double vision is worse in the morning she can’t read anything. Her other symptoms are somewhat controlled with mestinon and she is just tired all day.

We had a follow up with her neurologist a couple of days ago and he suggested we put her on Rituximab directly instead of going for cellcept. Her radiation oncologist suggested we immediately continue the sessions so we are resuming that starting tomorrow

The last couple of days I observed that after meals for about an hour or so she has slurred speech despite timing her meals with her medication. We give her very soft food and make sure she has small bites and doesn’t chew too much, but she still ends up with slurred speech for the next hour. She says she feels a tingling or numbing feeling around her lips and her tongue feels slightly heavy. She has no swallowing, breathing or choking issues. Now her symptoms are mainly just ocular (the whole day), lot of fatigue and slurred speech after meals. Her other bulbar symptoms are thankfully controlled

If anyone has had similar experiences post thymectomy please share what you can as I am trying to learn as much as I can about this disease. Also have any of you had similar speech issues after meals?