Sensation head to toe - weakness
 

Hi,

I’m new to the forum and have done some searching but not found anything mentioned that I experience on occasion.

1st
Generally, when this occurs, I’m standing or walking. I feel a rush of weakness start from my head to my toes. I feel lightheaded briefly following the event. I quickly recover within 5 mins or so. It’s disturbing, nonetheless.

2nd
Yesterday I felt weird all day accompanied by GI issues, nausea and extreme fatigue.
A sense of surreal (mentally) is how I would describe the weird feeling.
Later in the evening, I was at work (just returned 3 days ago after being out 8 months following MG crisis) and I felt that dreaded weakness start but this time i didn’t recover. I felt so weak and for the first time, I could hardly keep my eyes open. My position requires travel and I had to leave that facility in order to drive to the next. About 30 mins in, I had to pull over as I just couldn’t keep my eyelids opens and equally as scary, I guess you could say my core went weak. I could not continue sitting upright, unsupported and found myself deeply slumped over in my seat, my muscles were so exhausted.
911 had to be contacted and I spent several hrs in a hospital where I finally recovered my sight and could support myself sitting.

Has anyone experienced this before?

Thanks for taking the time to read.




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I have experienced something very similar, but I don't know if it has anything to do with what you are describing! But before I go into that, I should mention that I think you should look into hyperkalemic periodic paralysis and hypokalemic periodic paralysis.

OK, so here's my story. I have MG, as diagnosed ten years ago by single-fiber EMG (I have repeatedly tested negative for all the antibodies).

I have some typical symptoms of MG, which come and go. In addition to the typical symptoms, I used to have collapsing spells similar to what you describe. They always happened in the late afternoon or evening, when I'm weakest. I would feel a sense of extreme weakness coming over me very quickly, and I would often collapse slowly to the floor (if I couldn't make it to a couch), without losing consciousness. The weakness would last between 20 and 45 minutes, and then I would recover. I collapsed almost every day. My kids would bring me a pillow or just step over me, they got so used to seeing me on the floor.

My doctors were puzzled. This is not a typical MG symptom.

In the middle of all this, I developed a new symptom: uncontrollable shaking, in spells. Went to the neuro. He noticed that the shaking stops when I'm distracted. Diagnosis (ack!): psychogenic.

I left the office in tears, because I felt like I would rather be sick then "crazy." But...the shaking stopped immediately. It actually was psychogenic, apparently. But it wasn't that I have emotional traumas that express themselves physically. It was a reaction to my myasthenia symptoms. The sensations of MG muscle weakness were apparently triggering this extra symptom. My neuro says that's really common! The primary symptoms of the disease trigger secondary symptoms. It can be really hard to sort them out.

Psychogenic reactions are not imaginary. They're real! For example, if you get embarrassed and your face turns red, that's a reaction to an emotion--but your blood vessels in your face are really dilating. If you faint when you hear bad news, that's a reaction to an emotion--but your blood pressure really plummets.

Anyway, after I figured out this phenomenon of what I think is best called psychogenic overlay, with regard to the shaking, I thought...what if that's what's going on with the collapsing, too? What if the sensations caused by MG are triggering this extra symptom through my reaction to them?

Well, I haven't had a single collapsing episode since that thought crossed my mind. It's been almost three years. I still have MG. I still get weak in the afternoon and evening--but that sensation of weakness no longer triggers collapsing spells.

I have NO IDEA if this is what's going on with you! I offer my own story only in case it's helpful. I most certainly don't mean to imply that anyone who feels weak, or has an unaccounted for symptom, is having psychogenic overlay! I most certainly don't mean to imply that any disease is "all in your head." But psychogenic overlay should be included in the list of things to explore and consider.

Much love to you as you try to figure this out, and as you deal with all the worry and fear of a new and unexplained symptom. I've been there, and it's brutal. Please write to me privately if you'd like to chat.

Abby