Life-Changing Journey: My First Twitch

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BarbiePetals

Well-known member
Just wanted to post a quick update for the newbies. It was 2 years ago today that I had my first twitch which started after a very stressful time and thyroid problems. After a few days it spread to my entire body. I have never been so scared in my life. I did not know what was happening. So to make matters worse I went to Dr. Google and of course you all know the rest. ALS, MS, brain tumors, you name it I convinced myself of it. Within the next 2 years I saw 2 neurologists, had a clean EMG, normal brain MRI and normal blood tests. Was told it was benign but it took me over a year to finally believe it. Please to all the new people, if you have seen a doctor and they tell you it's benign, please take that and run with it. Don't doubt it and don't go looking up things on the internet such as statistics. It only makes things worse. This condition can play crazy tricks on your mind. If it weren't for the people on this board I won't know where I would be. People like Mario, Basso, Kit, SuzieQ, MelanieJ, SimonW, SmartMister, they helped me so much. If there is anything I can do to help someone, please PM me anytime. I know how hard this to live with. Even after 2 years, I still twitch everyday. Sometimes in the 100's, sometimes in the 1,000's. I am currently taking Gabapentin which is helping. Hope this post helps someone out there. ~Leslie
 
BarbieThank you for the update. It certainly has helped this newbie. I'm glad you are living life to the fullest. Seven months in and I am striving to do the same. Posts from vets like you are more helpful than you know? Many thanks, becky
 
thanx leslie 4 updating.I would like to ask few questions regarding gabapentin.IN what dose n since how long r u on gabapentin?It töok how many days after taking gaba,to c responce?How will u define ur responce to that drug?Hope u will reply.........baily.
 
Well done Leslie, and thanks for the post. A real lifter as well as an insight on a mental perspective on how to deal with this thing we have. All I can say is 'keep on truckin' you are doing fine!cheersRodger
 
Leslie this is a great post and it is good advice to the newbies to take thier doctors advice and run with it. I am glad you are being helped by the gabapentin and thank you for all your inspiration and help on this board. :D) Mary
 
Good to see how well you are doing. These old-timer posts are great for the newbies. And thank you for the help you've given me over the last 2 years!
 
Leslie, thanks for the post. I have always felt that you were my "twin" in this since our symptoms began at almost the exact same time. I can still remember vividly when my finger started moving back and forth on its own and the total freak out it caused. I ended up at a clinic on a Saturday to get some anxiety meds since I couldn't get in to see my GP for a few days yet and was literally going crazy. Two years later I am twitching all over and while I am still looking for that cure and/or reason why this is all happening, I can cope much better and this board went a long way towards helping that. JRO was one I remember who especially helped. After getting a bazillion blood tests run, trying just about every supplement ever know to have calmed twitching/helped nervous system, and trying out most meds, I have finally settled on clonazepam for calming the twitches and baclofen for helping the cramping (gabepentin had no effect). And I, too, am open to any PM's. Knowledge (real, not from Dr. Google) is powerful for us and we need to share, share, share. Good luck Leslie and to everyone else.
 
Leslie,I started twitching 2 years ago in July. For some reason, it took a long time for my bfsforum.com registration to be activated. Although I couldn't contribute, during that whole time, YOU were one of my lifelines. I remember being so thankful when reading about your toes moving. That's how this whole nightmare started for me. Thank you for joining this board and thank you for 2 years of posts.
 

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