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Boo Boo 621

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I finally have the nerve to come back on here long enough to share my experience with you all - especially you worriers.

I went through two months of freaking out, (I know that doesn't sound like a long time, but it is when you make yourself crazy with fear) having trouble sleeping and eating; then I found this site and was obsessed with talking about my feelings and symptoms, all the while trying to raise my now 8 month-old whom I am still nursing and stay at home with full time. In between sobbing, being scared, having nightmares and searching for answers and reassurance from perfectly wonderful strangers, I finally drove myself to Zoloft, (no longer taking it) therapy and a clean EMG. I chose a few folks to email privately that I had met on this forum since I decided I no longer felt comfortable whining to folks actually living with ALS. I felt pretty embarrassed and selfish and while I'm not calling folks who are scared of their symptoms selfish, I just personally didn't want to take up the same folks' time over and over again simply because I could not let go of my fear and panic.

It began Dec 10th when I realized my right calf was twitching incessantly. It was twitching both at rest, when I would stand up but had less weight on it and when I flexed my foot towards the floor it would also amp up. I could see it, feel it and sometimes when I didn't see it, I dug my fingers into my calf and could feel a sort of "rolling" sensation under the skin. It scared the heck out of me. I began researching. That's when I found this forum. Can you believe I referred to folks like Al and Beth as "all-knowing" not even stopping to realize they were in fact living with the very disease I was all of a sudden terrified of? That may sound odd it being a forum and all, but I couldn't get past my own fears to see I just jumped into a very important and relevant comfort zone for many. Everyone that decided to take on my questions and concerns were very nice and supportive. Some even kicked me in the butt from time to time (much needed) since everything I would describe was the same over and over again. I was doing the ole asking the same questions just wording them diferently. After all the research, I found out new information which was even more the kiss of death for me. I started inspecting my entire body OVER AND OVER. I was measuring limbs - only to find my right twitchy calf - had a bit of a smaller, flatter muscle. Instantly I knew it was atrophy! I also had a twitchy ring finger on my left hand and teetered between ALS and Parkinson's and felt like I was losing my mind. I would jerk in my sleep as I would start to fall asleep so that HAD to be myoclonic jerks. I inspected my tongue SWEARING it was twitching and leaning to the left when stuck out which meant bulbar onset and atrophy. I swore I was talking funny too. I sought out other sites as well, like BFS, Benign Fasciculation Syndrome and even read the first 50 pages of Michael J. Fox's book while sitting my the public library - when I was SUPPOSED to be checking out a good mystery to distract my mind! I also experienced ulnar entrapment syndrome which made me believe ALS was beginning in my right hand because my right pinky and ring finger was a little less flexible than theother fingers/hand. That's what can happen when you have a baby you constantly carry on that bent arm. Or are constantly typing on the computer and sleeping on the arm folded under your pillow.

Anyway, I do not want to take up too much more time here, but I wanted to reach out and thank those that spent time answering and reassuring me and even those few that got to know me a little more away from the forum. While I truly (no offense!) need to stay away from this forum as I am not totally cured of looking up symptoms to continue to make sure the clean EMG is a good thing right now, I do want to offer something to worriers. If you are interested in sending me a private message or just want to vent without becoming too much a nuisance (if you even feel that way yet!) :) please feel free to do so. I know what it was like to be so scared and not have immediate family understand the worry and obsession along with not wanting to overstay the open arms that are offered up here. I am no doctor or psychiatrist, but do understand how the mind can work and play tricks on you if you let it. As I mentioned earlier, I did have an EMG that came out normal and I am trying to move on from the fear that pretty much disabled me. While nothing is 100%, I must move on for now and not think about what could be in the future or worry these results are only temporary and that things will go down hill soon enough. I have a baby girl to live for and I hope that if you are as terrified as I was, please stop and think - especially if you do get a clean bill of health from a neuro - that you must believe what you hear and not worry about "what ifs".

While I go by Boo Boo - a nickname my parents gave me as a baby and one that my husband calls me, my name is Marie and so far will live without ALS or MND. Much love and respect to everyone out there and on this forum. Your strength and happiness is truly remarkable and shames me (in a positive way) into being thankful for every day again.
 

brendapals

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hey there boo!
I had wondered about you over the last month or so, so glad you posted again!

And congrats on the clean EMG! That's awesome news,
Enjoy that baby girl,
take care,
brenda
 

Zaphoon

Extremely helpful member
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Aug 2, 2008
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Boo,

Thank you for your introspective post! I'm sure it will help many in the future. Enjoy your new liberation!

Zaphoon
 

rose

Extremely helpful member
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Mar 29, 2008
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Maryland
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Anytown
Boo,

You are very thoughtful to share this. I hope others are able to be helped by what you've learned.

Even though I understand why you say you need to stay away, please know that we're always here for you.

Like Brenda said, enjoy that baby girl, it just keeps getting better with kids (( ((Hugs! ))))
 

Boo Boo 621

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41
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Well, I'll check in, especially if there's anyone that needs a viewpoint like mine. Or just someone to help talk them out of a panic attack! My baby is growing like a weed, don't wanna be distracted by things out of my control any longer. :)
 

lydia

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Hey Boo Boo,

I loved your post!

Lydia
 
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