relapse--still baffled
 

Hi, everyone. I'm the one with atypical MG--at least that's my best guess (seronegative, mildly abnormal SFEMG, main symptom: weak truncal muscles).

I had an excellent month in which the Mestinon seemed to be making me almost normal at least until the evening. Then, for no reason I can figure, I woke up one morning a week ago back to where I was: tilty all day, hard to walk at all in the late afternoon because I can't hold my upper body upright.

I've had symptoms since last October. This month's respite was the only time I had any period of time where I wasn't gradually declining.

Are these up and down patterns normal? I really can't figure out what set me back. Thanks.

Abby

Hi Abby,
I'm sorry that you have had a setback. It is very frustrating when this happens for no apparent reason. What I have found helpful for me is to write everything down in a notebook that I call "My Health Journal" and I mean I write EVERYTHING down. Some of the things I record are the amount of hours I sleep every night, naps taken during the day, food and beverage intake, medicene and vitamins I take, meditation/ prayer time and all activities including excercise that I do on a given day, especially if I do more than what I should have done (we all are guilty of those days and we soon suffer from then later) I also record stressful situations I encounter and doctor visit information. This kind of gives me an idea as to what may have caused or lead up to the relapse. After keeping a health journal for a while, you may find certain patterns that you can identify that made you feel worse. I know this doesn't help you now but if you don't do this already then maybe you should try it. When you can read over the information you have recorded every day, It really helps you to get to know your body better. We are all unique individuals and this helps you to be more in tune to the things that your body doesn't like :(

Unfortunately sometimes we have relapses for no apparent reason :confused: That alone can stress you out more which in turn makes you sicker.

I'm sure there are others on here that will be more helpful by posting additional ideas as to what may be wrong. I pray that you can figure out what is going on soon so you can feel better again. It know how upsetting it is when things are improving for a while and you are hit with a setback.

Loving Hugs,
Shari

I agree with Shari, keeping a record is helpful, it can help identify things that help or make things worse for MG.

I also have found that my MG symptoms go up and down in a cycle. I continue to discover new things that help my MG, and it seems that each "up" time is slightly better than the last and each bad MG time is not quite as bad as the last.

Most of my good days are when I eat well, eat small meals, eat nuts/seeds, avoid stress and chemicals, take vitamins, and have some physical exercise and a little time in the sun.

My bad days are usually when I eat processed food, don't eat a variety of good food, don't drink enough water, have my period, have a lot of stress, eat a big meal, or stay inside all day.

I think that the ups and downs are part of MG.

I also think that diet plays a huge part in the severity of MG symptoms. It takes a lot of work, especially at first, to change the way you eat, but I think it is well worth the effort.

I hope you are feeling better.