Mustle Weakness, Fatigue Comes and Goes

[argosy44]

Hi, I just found this website today and am very excited to talk to someone about my issues.  A year ago in April 2007 I was standing in my livingroom and felt all of my energy leave my body and I did everything I could to get into the bedroom to lay down.  My boyfriend was yelling for me and I didn't have the energy to even tell him where I was at. I didn't know what just happened.  Along with that was severe weakness, wanted to fall asleep, and just could not talk.  It finally went away the next day ( about 24 hours it lasted). The same thing happened again in May of 2007, planting tomatoes on Mothers Day in extreme heat and just crashed again.  Again took about 24 hours to go away. Not another episode until September 2007, again in January 2008, and not again until April of 2008 where it got worse. In April of this year it all changed.  I was having attacks every two weeks that would last about three days, then every couple of days. It just seemed like it was just not going away at all.  It just kept coming and going until June 26, 2008 when it all finally went away again.  Came back again July 31st taking 24 hours to go away, again August 27, August 30, and September 3rd.  
In September 2007 I went to my family doctor, who ran blood tests, requested an EEG to be done and all was fine.  I saw another doctor in the same office one day and he said with all of my sympoms that I had Myasthenia Gravis and sent me to an Neuo who has done all kinds of blood work, EMG, MRI of the brain where they found about 10 white spots on the white part of my brain whatever that means.  He said all test results are normal and is now doing a sleep study next week for Narcolepsi.  WHAT?  I don't have Narcolepsi.  He said that they can find out all kinds of things in a sleep study these days.  And he said not to be concerned about the MRI until after sleep study results come back and then we will try to figure out where these white spots came from.

How it all comes on is just out of the blue, extreme weakness in my thighs.  I weigh 120 pounds and it feels like my thighs are trying to carry 200 pounds of weight. It is like I feel it coming on thru my thighs.  Then I feel it in my eyes.  I feel my right eye get really heavy and when I look up, I feel my eyelid hanging down, it is weird. The next thing is my face feels heavy, droops around my mouth area.  I am so weak, I can't think, and I do wierd things like trying to turn off my computer by pressing the top of my head.  I have to leave work and get home.  My biggest fear is driving home from work but somehow I drive 25 miles and as soon as I get there, I fall into bed and sleep for an hour and when I wake up I feel like I might be a little better. NOT!!!  As soon as I get up and walk around, I go back down.  My fiance said that he really sees it in my face and eyes.  I guess I really want to get in touch with anyone like me that I can talk to that might have been diagnosed with something.  Thank you so much for just listening.

[argosy44]

Hi, I am so glad you wrote to me. I had another crash event this morning. I usually don't sleep well on Sunday nights but I did last night.  I have noticed that my hand, finger, shoulder and head jump before I go to sleep and last night they were mild.  I woke up this morning feeling good, took a shower, and ate breakfast.  While I was drinking my coffee I could feel myself going down.  John looked at me and said "it's happening isn't it"
I feel like I can't move, like I am stuck. He would ask me a question and I would just stare and try to answer him but I don't have the energy to even say yes or no or even shake my head. I have a friend who told me yesterday that other people have mentioned MS so I looked up symptoms and have alot of the same. I just get so upset when I miss work and not to be able to do anything when this happens except lay down all dal.  I only took an hour and a half nap this morning and still feel drained. I have noticed that my head shakes, my hands, and my legs too. Like when you are very cold.
Oh, I am 49 years old.  The narcolepsy thing, I don't think I have that at all.  When I even try to take a nap on lets say a Saturday, I can't, I never have been able to nap.  I have always been so full of energy.  Yesterday, I cleaned out the garage, and that took me four hours to do that. Normally, I go 100 miles an hour. Your reply would be greatly appreciated.
Thank you

[ggreg]

I have a fainting feeling similar to you, but not the same.  The reason I get "weak-kneed" is because I haven't been eating enough protein, my legs get heavy and I feel faint.  Another thing I got for a while that is similar to yours, but not the same, is from a medication I was on.  Thought I would pass out and sort of tilted when I walked.    

Your question about how come they think you have narcolepsy and did a sleep test, is because sometimes people will get this condition where they fall asleep all over the place.  I think it's on account of for some reason their sleep is not deep enough.

Another thing, you don't mention your age, but if you're under the age of 20 or over the age of 40, sometimes women's issues cause this, so a gynecologist can make sure you're okay in general.  There is also a possibility you're anemic, but I think the blood tests would have showed that, but you could ask for a repeat blood test specifically for anemia, and also have them look at your vitamin and mineral and electrolyte situation.  Also, there is a chance you're getting dehydrated, so obviously drinking enough water helps.  And if you spend a lot of time in front of a computer without getting up frequently, all sorts of oddball things can happen to a person.  I almost fell out of my chair one time until I cut back my work hours.  

But what makes you different from anything I know of is how you went to turn off your computer and you pushed your head instead, which does suggest a neurology type brain issue.  Which could be you were, for example, in a sleep state, from narcolepsy, and kind of dreamed your way through that computer deal.

I sort of think if nothing that I'm saying or your new sleep test doesn't seems to help you, you could ask for your MRI report and try to get the pictures, too, and take them to another neurologist for a second opinion.  Hope this post gives you some direction.