MG Symptom Details
 

Hello,

I was wondering if I could get some inputs regarding your symptoms. Like for instance, when you say your arms and legs are weak, do they hurt, do you have a burning feeling with any activity, or just weak with no pain? Do your muscles get sore if you have to push yourself everyday along with being weak?

Do you always have the symptoms or does it come and go?

In the beginning of the MG, was it not as bad and then got worse?

Do your eyes blur or have double vision most of the time or just periodically?

Does the droopy eye always droop?

Thanks in advance!

Hi Hope,

The unhelpful but true response is that everyone is different and everything is different at different times! I suggest reading the sticky post "Diagnosis, treatment, etc." with all the introductions as most people describe their symptoms there.

My personal history to date: I had double vision episodes frequently the past 4ish years, with some episodes of arm and hand weakness lasting several weeks. One episode of weak jaw muscles impacting chewing during a meal.

I went to the urgent care in February with ptosis, where I was evaluated by a neurologist and neuro-opthamologist and given a tentative diagnosis with a Rx for prednisone (at the time, neuro didn't listen to me "remembering" bouts of arm weakness and thought I was only ocular or very very mild, so he thought prednisone would work). Prednisone helped for about a month and a half, then periodic weakness and fatigue symptoms started creeping back in - mainly in my arms and jaw and mild ptosis of my right eye.

Had a big exacerbation that sent me to the hospital 4.5 weeks ago and forced me to have plasma exchange: I had had a couple of days of lying in bed with leaden arms, weak neck and face, and slight labored breathing. The day I woke up feeling better, I pushed myself too much and had symptoms that mimicked either a pulmonary embolism or heart attack (rapid heart rate - for a long time - cold sweat and shortness of breath), and got admitted to the hospital from the ER when I made sure the attending doctor knew I had MG and he should get in contact with my neuro and the neuro on call at the hospital.

3 weeks on and I am getting symptomatic again and it's things I didn't really have that often before - weak face and slightly labored breathing. So you see it can change and fluctuate within one person as well as different people having different symptoms.

:hug:

Hi Hope4Me,

As MG_Kat33 said, everyone is different. I do not technically have a diagnosis of MG, but it still seems possible that I could have it. We have had trouble diagnosing my generalized weakness. I'll respond anyway.

For me, I do not generally have pain in my arms and legs. Generally, I only have weakness. Yes, sometimes I do have soreness when I have to push myself too hard to try to walk or do other activities when my muscles are too weak. I think this is not uncommon. For me, my ability to breathe is also a big concern. I struggle to breathe as my symptoms progress, as the muscles in my chest are weak. I always struggle with breathing at some level, but it gets worse as my weakness is worse, and I can end up in the hospital needing treatment.

In my case, I always have symptoms, but they vary in intensity. Some days are better than others. Some days are fairly good, and I am not too troubled by it, although I haven't had a good day like that in quite awhile. I also feel better in the morning, and I get worse as the day progresses. I am much worse in the evening, for instance. I am also worse when the weather is hot, like it will be here this weekend.

For me, yes, my symptoms were not as bad at the beginning as they are now. We are having to do more intensive treatments more regularly. I have plasmapheresis several times a week, just trying to stay on an even keel and stay out of the hospital. I hope things will get better and more stable at some point.

My visual symptoms vary, just like my other symptoms. My eyes do better in the morning, just like the other symptoms I have, and I have more problems with my vision and ptosis as the day wears on and I grow more tired. This, too, is also worse in hot weather.

With my ptosis, at least for me, it does not always droop. When I first wake up in the morning, my left eye is pretty good. It is the one that shows the ptosis the most. It gets worse as the day goes along. Actually, both eyes can droop, but the left eye is worse than the right and can mostly cover the eye.

Everyone is different. Somebody else's experiences are undoubtedly different than mine. Your symptoms are unique to you, too. Please take good care of yourself, and hang in there!

Take care,
Erin