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Author Topic: HELPING TO EASE ALS FEARS  (Read 420 times)

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Offline beejay

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« on: April 18, 2014, 10:13:15 PM »

I'd like to share my story with you all. Hopefully, this will help ease the anxiety of those who are worried they may be in the early stages of ALS. SPOILER ALERT: I don't have ALS :)

I'm a 31 year old male who is (generally) pretty healthy. Approximately 12 months ago, I began experiencing foot drop on my right side (and occasionally the left). At one point, I was noticing this several times a day. Of course, I googled my symptom and became concerned that I may have a degenerative neurological condition.

Off I went to my GP, who ordered an MRI of the brain, suggesting that I may have multiple sclerosis. If the MRI was clear, he said it would more likely be something in the "weird and wonderful" category (his words). I had an MRI, which was clear. Again, he said "You probably have something in the weird and wonderful category." Needless to say, I was quite alarmed. He sent me to a neurologist.

The neurologist ordered an MRI of the spine. Again, this was clear. My foot drop seemed to have eased slightly by this point (though it was still there) so he put me on a "watch list." He told me to come back if new symptoms developed. I was so concerned at this point (about ALS) that my sense of wellbeing was significantly damaged.

Strangely, the foot drop seemed ease further. But then - just a few months ago - a new symptom appeared. Now, my tongue (just to the tip, on the right), developed a persistent twitch. I went to my GP (who was clearly concerned) for a new referral. Back I went to the neurologist.

The neuro said that my tongue twitch was very odd, and ordered another MRI of the brain. It was his belief that it would be totally normal. Of course, I was by this point resigned to the likelihood that I had a medical condition in the weird and wonderful category.

This time, I was injected with contrasting dye during the MRI.

Then, there it was: a non-cancerous cyst in my brain placing pressure on some nerves (particularly the one controlling the right side of the tongue). The neurologist said the words I had been hoping to hear for over a year: "You don't have motor neurone disease."

I have more challenges ahead of me. If my speech is affected, I may need neurosurgery. But this is NOT TERMINAL. It's possible I won't need medical intervention at all; I may just need an MRI every 6 months or so to keep an eye on it.

So here's my message: the nervous system is a highly complex and intricate part of the human body. There are a multitude of things that can go wrong with it. Diagnosis is the domain of trained experts (neurologists), not "Dr Google."

So, if you're worried about symptoms, go and see a neurologist. But remember, no matter how concerned you are, THERE IS EVERY CHANCE YOU DON'T HAVE ALS. It could be anything.

Best wishes and I hope this helps at least one person avoid the anxiety and stress I have experienced in the in the last year or so.
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Offline greend

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« Reply #1 on: April 30, 2014, 10:52:41 AM »
Thank you for your positive post.
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