My symptoms...what were yours when you were first diagnosed?
Posted: Sun Dec 01, 2013 10:04 am
I would like to share what's been going on with me recently and see if any of you have experienced any of the same symptoms.
I wanted to see what your first symptoms were and how long did they last? Do they typically go away or do you always have them?
A about 4 yrs ago when I was 22, I woke up in the middle of the night to my left arm and leg being numb. I immediately panicked, thinking I was having a stroke or something. I waited a few minutes until the feeling started to return and walked around until the tingling subsided. Went back to bed and the whole next day my right side felt weak. I just didn't feel right. Over the next few nights, I kept waking up periodically throughout the night with similar symptoms and it would be any extremity. (Drs. would later say it was from sleeping on something, BUT I had never had that before, unless I like woke up on my arm lol... and it seemed too frequent to me). I also started getting muscle spasms, or charlie horses in my calves while sleeping and my legs would be tight for days. My calves always felt tight, especially after minimal exertion, and they also would feel heavy. I always felt tired and would get a "foggy" feeling. I also have hypothyroidism so they just attributed the fatigue and foggyness to that. When all of my results came back normal (MRI, bloodwork, EMG) I was told to "take a nap," "relax because it's probably anxiety," or my favorite, "you're too young to have these problems, you're the healthiest person I've seen all day. Go home." lol yeah, that really happened. Eventually, my symptoms got MUCH better and for about 3 yrs I was almost completely symptom free. I would get tired here and there and my legs would get tight, but I got used to it and it wasn't as bad as before.
Fastforward to now: About a month-2 months ago I noticed vision changes. My right eye isn't as vivid as my left and I think it's blurry. I keep thinking I need new contacts but I just had my vision checked to be sure. It's always less vivid since I initially noticed it but at times it seems like it's blurrier than others. My right eye started to look a little droopy and was tingling and occasionally twitching. Saw my primary about this and she said I may have myasthenia gravis and to see a neuro. Currently waiting for my appt.
However, in the meantime, the tightness in my legs has returned, even when I do something as simple as walk my dog around the block. I've started to get this burning feeling on the outside of my calf- lasts briefly and then goes away. Happens a few times a day. The right side of my face appears more swollen than left. Sometimes, an arm, usually my right, will feel weaker than the other one, but I can still move it and the strength is the same... it just feels like it's weaker when I push, squeeze. I've started to get dizzy on and off throughout the day but it lasts very briefly, only a few seconds. I've developed an intolerance to heat and I usually LOVE the heat. When I get warm to quickly, I've been getting REALLY splotchy... to the point where it looks like I have hives, but it's flat. It goes away within like 20 minutes.
Do any of you get these symptoms? If so, what exacerbates them, what helps, and how long do they last? Do you go through a long period of time without any and then they come back? And when they return, do they stay for a month or are they on and off for a month?
Thanks in advance!
I wanted to see what your first symptoms were and how long did they last? Do they typically go away or do you always have them?
A about 4 yrs ago when I was 22, I woke up in the middle of the night to my left arm and leg being numb. I immediately panicked, thinking I was having a stroke or something. I waited a few minutes until the feeling started to return and walked around until the tingling subsided. Went back to bed and the whole next day my right side felt weak. I just didn't feel right. Over the next few nights, I kept waking up periodically throughout the night with similar symptoms and it would be any extremity. (Drs. would later say it was from sleeping on something, BUT I had never had that before, unless I like woke up on my arm lol... and it seemed too frequent to me). I also started getting muscle spasms, or charlie horses in my calves while sleeping and my legs would be tight for days. My calves always felt tight, especially after minimal exertion, and they also would feel heavy. I always felt tired and would get a "foggy" feeling. I also have hypothyroidism so they just attributed the fatigue and foggyness to that. When all of my results came back normal (MRI, bloodwork, EMG) I was told to "take a nap," "relax because it's probably anxiety," or my favorite, "you're too young to have these problems, you're the healthiest person I've seen all day. Go home." lol yeah, that really happened. Eventually, my symptoms got MUCH better and for about 3 yrs I was almost completely symptom free. I would get tired here and there and my legs would get tight, but I got used to it and it wasn't as bad as before.
Fastforward to now: About a month-2 months ago I noticed vision changes. My right eye isn't as vivid as my left and I think it's blurry. I keep thinking I need new contacts but I just had my vision checked to be sure. It's always less vivid since I initially noticed it but at times it seems like it's blurrier than others. My right eye started to look a little droopy and was tingling and occasionally twitching. Saw my primary about this and she said I may have myasthenia gravis and to see a neuro. Currently waiting for my appt.
However, in the meantime, the tightness in my legs has returned, even when I do something as simple as walk my dog around the block. I've started to get this burning feeling on the outside of my calf- lasts briefly and then goes away. Happens a few times a day. The right side of my face appears more swollen than left. Sometimes, an arm, usually my right, will feel weaker than the other one, but I can still move it and the strength is the same... it just feels like it's weaker when I push, squeeze. I've started to get dizzy on and off throughout the day but it lasts very briefly, only a few seconds. I've developed an intolerance to heat and I usually LOVE the heat. When I get warm to quickly, I've been getting REALLY splotchy... to the point where it looks like I have hives, but it's flat. It goes away within like 20 minutes.
Do any of you get these symptoms? If so, what exacerbates them, what helps, and how long do they last? Do you go through a long period of time without any and then they come back? And when they return, do they stay for a month or are they on and off for a month?
Thanks in advance!