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Teedot

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Oct 17, 2016
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Learn about ALS
Country
CA
State
On
City
Toronto
I hope it may defer some to look further, to dig deeper or to stop life when there is no reason.

I come from a family with a genetic disease that has meant death for all women on my maternal side before the age of 55. I never thought closely about that, until I was somewhat older (36) and had my first child. Anyhow, in July of last year, I got a massive promotion when my boss retired. Suddenly, I was in charge of an entire department and it was overwhelming at times. Not surprisingly, end of August, my eye began twitching - non stop, driving me absolutely crazy. I visited my doc - who said to increase water, take magnesium although all my blood work came back perfectly.

After 2 weeks, it was still going and I ... I ended up on this forum. Quickly (and this is hard for me to admit), I seemed to start experiencing issues swallowing. My legs felt rather heavy and it seemed my thumb wasn't properly doing its job. Being in Canada, an EMG seemed impossible to immediately obtain so I traveled to the USA and paid out of pocket.

Normal.

But - my mind refused to let go. I had convinced myself I was too early. I have always been so in tune with my body, beyond a doubt I noticed symptoms before the average person would. Another EMG was surely advised.

Normal, except for one leg muscle with long duration muap.

And this is where I jumped into the deep end. I started paying online services to "review my reports" - I saw a neurologist - who said all was normal. I had more blood work done, all was normal. I insisted on another EMG and my doctor, above all - extended it to me.

This EMG, done by an MS specialist in her field showed very mild to mild abnormalities in nearly every muscle (reduced recruitment, long duration, high amplitude) and some muscle twitching. She spent an additional 30 minutes with me, stating over and over that everyone to some extent will have these when an experienced EMG technician will take them. But I wasn't convinced. Since November of last year I have lived every single day by upon waking, checking for more twitches. I have done 2 more lab test (CPK - normal) and did a full spinal MRI (a slight broad based bulging lumbar disc) - which couldn't cause symptoms.

I the past 8 months I spent countless hours searching for them with a flashlight and despite the fact that my father and sister both have them in their legs - I am still convinced I am in the hyper-excitability stage of ALS.

So - I pay for another review through Best Doctors. A Harvard Neurologist claims I am fine. I - clearly knowing better - am convinced he may have missed something and I demand a secondary review - which I get! This wonderful lady (mentioned on this board, Dr. Sara Austin) writes me a heartfelt letter explaining me why my EMG may look abnormal, it was and is essentially normal. She said I do NOT have als, nor am I at a greater chance to develop it.

Now - I do have muscle twitches. My legs/calves/feet twitch nearly non stop and 2 to 3 times a day another muscle in my body will jump around for a few seconds. You can see it, very clearly - it's not in my head.

But so does my dad, my sister and my husband. I am embarrassed to admit a fair share of my friends and family have been submitted to the flashlight test and I assure you, these twitches seem to be quite common.

I had 3 EMG's
I saw 8 doctors
I saw 2 neurologists
I had 2 additional ones review my files
I had blood work done 6 times during the past 9 months
I had an MRI done from the top to the bottom of my spine.

and with that, I had 8 months of PubMed searches, anxiety, tears and quite honestly, a sub-par quality of life. Why? I can't tell you.

If you come here, and this is your first visit - go see your doctor. If what they tell is that there is no reason to believe it is ALS - TAKE IT TO HEART. Don't diagnose yourself, don't look for further signs, don't read more stories because this can become a very, very dark period for absolutely no good reason.
 
Neurological conditions are very, very easy for the mind to latch on to in the development of a severe health anxiety. They all share some basic things in common:

1. No single, definitive test basically for any of them at this point.

2. Often vague and random symptoms that could potentially be explained by many causes, or by no cause at ll.

3. Long waits for appointments to see specialists, it's not like getting into the Family Practice guy for a throat culture. Even in the U.S. appointments can be two months out.

4. Many Neurologists, frankly tend to be a rather insensitive, science geeky lot. Non-specialists in particular make random "could be" observations - often.

5. Treatments for some conditions, but none for ALS but symptom relief and no cures for any of them. Terrifying prospect.

6. VERY easy to turn normal/typical transient symptoms and make them fit into the health anxiety box. Legs tired? ALS! Twitches? ALS! Cramps? ALS! Anxiety makes you forget you have had ALL of those symptoms basically at least every month of your life.


It's no wonder we see so many people here grappling with ALS fears. Thank you for coming over and talking about your experience. I hope it helps others.

Here is one I like to remind frightened people of as well:

In 2017, it is estimated that 63,000 people will be diagnosed with throat cancer in the United States. It is estimated that another 5,400 will be diagnosed with ALS, and another 10,000 with Multiple Sclerosis. 32,000 people will die in car crashes. Your odds of dying in a car crash this year are nearly 6 times higher than that you will be diagnosed with ALS, at least in the United States. Not a happy thought, but I think all the stats give some perspective that fearing ALS is sort of like fearing falling space matter. Possible, but highly unlikely.
 
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