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mommyof2boys

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Joined
Jan 24, 2017
Messages
9
Reason
Lost a loved one
Country
US
State
GA
City
Columbus
In january (i believe) I posted on this forum after experiencing twitching in my legs for a few months. I had done a lot of "research", reading, and self-diagnosing. My grandmother died of ALS in the 80's. And so familial was within my radar. However, it would take a month for me to even see a physician to obtain a referral to a neurologist. I stopped eating. I stopped sleeping. I almost became neglectful of my children. I definitely became neglectful of myself and my fiance. I cried often. I lost weight. I can say, without a shadow of a doubt, it was the darkest period of my life. A lot of symptoms showed up during this period that I would never experience again, but would later be found on several lists of symptoms and signs of ALS. And my brain made that connection and kept it. To say those first few months of 2017 were a nightmare would be an understatement.

The physician who saw me in March did a basic neurological exam and found no weakness, no abnormalities. Still she referred me to a neurologist who saw me in April. His first neurological examination was basic as well but a little more in depth and he stated that he didn't believe it was anything serious but still scheduled an emg. I became severely sunburned after a camping trip near my emg date so we has to reschedule but I finally had a NCS and EMG on both legs on the 15th of May.

I was also accepted into and began classes for a practical nursing program around then as well.

On May 31st I met with the neurologist who told me everything was completely normal and not to worry about any serious diseases such as Lou Gherig's disease. That was the first time the "L G" bomb had been dropped with him because as I had read on this lovely forum it is best to simply tell the physicians your symptoms and allow them to come to a diagnosis on their own. The neuro never even asked for extended family history, just my immediate family. So I never told him my grandmother had ALS.

I asked what it could be based on my symptoms and all the blood tests and other tests and he said it was benign myoclonia which I guess is like bfs. But I know what it was NOT. It wasn't als.

I walked out feeling fresh and new. Did not want to see the results to scour it for dennervation or reaction times. Did not ask about likelyhoods of developing it. Did not visit or read a single post on this forum or any others until today, to post this post. I still have the twitching. I still have a twitch on my tongue that is always there. I still have the stray thought of what if... every now and then but what I do not have is ALS and I MUST appreciate it.

I will hopefully be a nurse by this time next year. I can say I will forever hold in a special place in my heart the victims of this disease. I have seen the heartbreak it can cause family members as I have seen it in my mother who still grieves her mother, over 30 years later. But I've also seen the sheer strength, love, and wisdom in the ones diagnosed by reading the experiences on this forum. And I can see the compassion, empathy and strength of caregivers as well in the posts in this forum. I hope, as a nurse, I can help bring light and love into the lives of people like you, as you have for me over the past few months.

This is goodbye and I wish all of you comfort, rest, and peace!
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,565
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
City
Cleveland
So glad you realize you do not have ALS and can move on and have a wonderful life. Thanks for updating us! Good luck with your nursing studies!
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,456
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Thanks for stopping by. I'm sure you'll be a stronger nurse and mom for this experience. All the best.

--Laurie
 
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