wish you all were here and we would have a group hug. listen to what i say. all you people who are having als and ms symptoms better run or wheel yourself to the closet dr. to you that knows about lyme disease. good luck - you'll drive for miles because guess what - dr's are too dumb in making the connection. my husband was told by two neuros that he had als - duh, he had lyme. you better look at the connection between als,ms and lyme disease. 60 people were told that they have als -- all tested postive for lyme by our lyme dr., that was just our dr. type in google search - als/lyme connection and see what you get. if my stupid family dr. back in 2000 would have known what a lyme bulls eye rash looked like, i wouldn't be in the hell i am right now and my husband won't be crippled and in a wheelchair. two years of misdiagnoised lyme can do allot of damage. the alsa website does all that view it a grave dis-service. they state that other things need to be ruled out that can minick als, but they dont' say ****** PEOPLE GET A LYME TEST DONE NOW TO SAVE YOUR LIVES ******* NOT ALL LYME TESTS ARE ACCURATE AND YOU NEED TO HAVE THE CORRECT ONES DONE. We went to two neuro's that ALSA listed as ALS specialist, and both missed the lyme disease. both dr's. was asked directly to run the test, but just didn't do it for some reason. so email me if you want to know anything about lyme. so if your having muscle twitching, muscle wasting, drop foot, problems walking, stumbling, panic attacks, dizziness, irregular heartbeats, brain fog, problems all of a sudden with you eyes, hearing, floaters in your eyes that look like worms, headaches, upper body weakness, bells palsy, joint pains, muscle pains, a pain in the back of the neck (mine is always a little to the left ) your not crazy - you better think about lyme. my husband had 3 embedded ticks from 1991- 2002, but i never did. i got my bulls eye rash up at lake erie from deer fly bites in 2000. president bush signed public bill 107- 116 jan 10, 2002 - to get the cdc off their butts and get the public and the medical community educated of lyme disease. well guess what - no one still knows anything about the 2nd fastest growing infectious disease in our country - 2nd only to HIV. Seems like no one cares. our insurance company fortis health - milwaukee, WI - will not pay for my husbands antiboitics stating that treating late stage lyme with anitbotics is experimential and nonconclusive. bull **** - it just costs over 200.00 per day for this anitbotic and they don't want to let go of the money. als/lyme - yeah how much money is rasied every year for als research... can you guess how many trillons of dollars - every year - no cure - people die- do the widows, and children get the money ????? so think about it, you can donate blood and not know that you have lyme disease - they don't test donor blood for it - and guess what you just passed it on. may 2002 - big news - minocyline slows down and or stops the progession of als symptoms in lab mice with als. this is an antiboitic -slows down als. i asked both of the neuro's that told my husband that he had als - please can we start with the abx that helps als ???? both said NO, it's not on the FDA approved protocol in treating als. guess what ???? you can take the stuff for years if you have pimples on your face, but you can't take it for als that will kill you in 3-5 years. something is wrong with all of this people. why is the government and the medical community trying to hide lyme disease ?????????????
thanks snooze, I will try!
Jennifer -
Any chance that you also had fatigue for months/years prior to this, and are also experiencing an usually high level of anxiety and insomnia in addition to your other symptoms?
Except for the symptoms I listed above, your symptoms sound a lot like mine. You might want to check out the article "The Importance of Magnesium to Human Nutrition" by Michael Schachter MD found at www.healthy.net.
If the article fits your situation, post again and I'll tell you more. I've been taking magnesium glycinate for about a month now, and it has taken care of so many of my symptoms including the swallowing problem, numbness/tingling, muscle aches/pains, feeling like I wasn't getting enough oxygen, plus stiffness in my fingers that I thought was arthritis. No more fatigue! I feel like I've gotten my life back. My twitching is almost gone--it's only occasional now and doesn't have the wild intensity it had when it first started and it kept me awake all night.
~snooze
This does not sound like ALS, especially given the fact that you are young, and have had a normal EMG. Have other systemic disorders such as lupus, connective tissue disease, or vasculitis been considered. I would have these investigated, and then consider a second opinion at a large academic neurology department. Good luck.