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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 01-26-2006, 04:49 PM   #1
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Very Scared, ALS?

Ok so i have been having problems with this since Christmas. Started with a burning sensation in my left ear that spread to my eye, my eye felt swullen but in the mirror it did not look swullen. The next day felt worse, vertigo, problem with eye and ear, felt very fatigued, could barely hold myself up, wanted to lay down and sleep.

Went to ER got Cat Scan done, was normal, had nastagmus in my eye. Had strange burning in the back of my head one night that went down the left side of my neck, Felt like i had a stroke. Went to ER again they did MRI (with contrast) and some blood work done. Neuro there thought i could torn my artery in back of left neck, rushed me to Columbia Presapaterian Hospital (Stroke Ward). While i was there they did another MRI and MRA, found nothing wrong with me. Did heart dopplers, neck dopplers and everything turned out fine. They could not tell me what was wrong.

Left Hospital relieved but still slightly worried. Went home (LA) and a few days later had same problems. Neck got stiff, could hardley move it. did not feel good, fatigued, felt like head was seperating from my neck. Went back to doc he gave me some major antibiotics sulfamethoxazole/tmp. I guess i started to feel better expect for my heart was racing a mile a minute and it gave me major anxiety, so i stopped taking drug. day after stopping neck stiffened back up along with severe pain in my lower back. went to ER they said it was nothing (they suck). Went back to Primarty Care, they checked thyroid, diabeties, HIV, Cyfilis, Hepatitus B, C, all came back negative.

So thus far the MRI of brain and neck say no MS, no diseases (that i know of). Inquired about Lyme Disease after neck stiffened back up, started Doxycycline, 3 days after doxy started no more neck problems, 4 days after doxy buring of arm went away but other symptoms got worse. Neck no longer was stiff but felt weak, left arm and shoulder feels weak, left leg feels weak, left eye still feels weird, got twitching all over my body for a week now. Went to Neuro again today, he did clynical exam, saw no sign of ALS atrofy or behavior. After this exam i have been having a hard time swallowing and my tongue feels weak. I am scared this doc just blew me off but he is familiar with ALS, he is treating someone right now with that disease.

He really pulled and pushed on my neck, maybe he straigned it enought to injury it slightly? Anyway after all this i am scheduled to to EMG test Feb 1st and CNS the same day. I still have twitching and its hard to type this message right now, fingers seem stiff. So if this is not ALS what the hell is it?

I do come from Old Lyme CT, i grew up there my whole life. Any thoughts would be greatly appreciated.

Just so you know i am only 30 years old and was very healthy before this time.

Last edited by Not ALS; 01-26-2006 at 04:50 PM.

 
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Old 01-27-2006, 04:46 AM   #2
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Re: Very Scared, ALS?

You should push further on the lyme possibility. There is a lab in California called Igenex in Palo Alto. You can order the kit from them and have your Dr. do the blood work to check for lyme. Igenex gets better results than traditional labs because they use more sensitive probes to run their tests.

Good luck and I hope you feel better soon...

 
Old 01-28-2006, 01:13 AM   #3
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Re: Very Scared, ALS?

"Went to Neuro again today, he did clynical exam, saw no sign of ALS atrofy or behavior. After this exam i have been having a hard time swallowing and my tongue feels weak. I am scared this doc just blew me off but he is familiar with ALS, he is treating someone right now with that disease."


What are you worried about? Read what you just wrote.

Its not ALS. Period. You don't have to fear the very worst. A lot of what you have described does not even sound like ALS at all.

 
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