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Is it ALS?
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MedHelp Member's Question

Is it ALS?

by abu_ahmed62, Nov 09, 2003 12:00AM
Dear Doctor

About 2 years ago I feel some inflammation in my left side especially in face and tongue. I visited many doctors in my country and they told me there is nothing wrong with me.

Before six months I went to two doctors  and do some tests, all were negative and they couldn’t find what is going with me  and they gave me xanax and other medicines. Now I am taking only Xanax 0.5 with no improvement. (I stopped taking Xanax since October 5th, 2003).

Before a few months I felt tired and fatigue, the previous days I was worse.

My symptoms are:

Burning sensation in my arms and sometimes in the face and tongue and I feel uncomfortable in swallowing

And I feel tired and fatigue and in the few days I found difficulty to run with my kids.

When walking there’s a pain in the knees and in the ankle and under feet and I also feel a little uncontrollable of balance

I fell some numbness in my legs and hands especially when a simple pressure on it.

I feel I have a drop feet. And sometimes I feel numbness and fasciculations in different parts of my body.

When I wake up I fell very tired and feel inflammation in both my arms and neck.

I feel there is atrophy in the muscles in all my body especially in my arm and leg.

Sometimes I fell like there are no muscles to support the body and be very tired (can you say such as electricity is switch off).

When I hold a bag or something I feel something compressing my spinal column.

When I wash my arms with cold water all my body shakes for a few minutes.

I also found that my tongue and lips are atrophied



Adam
Doctor's Answer

by CCF-Neuro-M.D.-CS, Nov 11, 2003 12:00AM
The symptoms you describe do not sound like ALS. A few thoughts include systemic disorders such as lupus, connective tissue diseases, sarcoidosis, vitamin deficiencies (B12 and E), or inflammatory disorders of the central nervous system. To evaluate this disorder further seeing a neurologist would be reasonable. If an EMG or MRI are available they would help to exclude certain diagnoses. Good luck
Member Comments (3)

by tarzinski, Nov 14, 2003 12:00AM
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 ?????????????

by zap, Nov 24, 2003 12:00AM
Dear Mrs tarzinski,

Thanks you for your comments of nov 14. I have had 6 persons in my family diagnosed with ALS. 5 have died; a 6th is quickly deteriorating. Early in his illness, he had what might have been a Lymmes episode. From your experience what test is the best test to detect the presence of Lymmes without the false negatives. Have you had any experience with IV doxycycline in people expressing thier Lymmes as ALS? Thank you for any help you can give.
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