Old Timer Needs Help at Talladega

Hey everyone!! How are yall? I had a little bird tell me that this site could use some old timer's help! I think after having this 3 years ago and now almost 19 months that I am considered a "old timer" and I hope I can help. Brief history- 3 years ago, end of 2006 into 2007 I was on lexapro and I missed a few doses while I was at Talladega race way..I had horrible withdrawals..had to go to the care center and be seen by a doctor..my blood sugar had fell extremely low, I was passing out, my b/p was wacky..all the good stuff..Well I was also dehydrated. So I left the race early and went home that night and I remember random twitching ALL OVER my body.. A lot in my legs but it popped like popcorn. I didnt think much about it as I had had a horrid day. I continued on about my life and never stopped to google @ that time. In January 07 I do believe it was the 31st I saw a doctor (Internal med) I mentioned random twitching and said can Lexapro cause this..he said it could but it was more than likely anxiety. Again, I took his word never googled and just lived with it. Eventually it stopped..to bad I can't remember when , where and how..or even if it REALLY did or if it just faded into the background.Fast forward, January 19th 2008, I was sitting in my den, about 3 months pregnant. My anxiety had got pretty bad during my pregnancy so the doctor started me back on Lexapro..as well as my klonapin...Well what do ya know? there went a thump thump thump in my thigh and after that...ALL OVER MY BODY even my pelvic region. It was hard to decipher baby fluttering from twitching. I dont have a lot of time to go into detail but this time I had more time on my hands so I googled BIG MISTAKE ..Im a nurse and I know better than to freaking GOOGLE symptoms or go to a reference book from school even..I freaked out. I thought about killing myself etc. I found this site and found some helpful people. Weird thing is..I never had another symptom until I started reading about it..then there went the "Ohh I got weakness", "Ohhh I got atrophy"..stage. WOW, you should have been at my doctor and neuro visits. Anyhow, clean EMG at about 3 1/2 to 4 months into with WIDESPREAD ON SET TWITCHING, 5/5 strength and power, perfect exam. I still couldn't except it was nothing. No matter who I talked to the reports I read from the Mayo etc...My Neuro was and is the Cheif of Neurophysiology and Chief over EMG's and all kinds of stuff and she told me with a 110% this is not ALS but BFS!I have a little girl running around right now and its hard to stay focused on what I am typing but to sum it up...when I was pregnant and started twitching and googled I was for sure I wouldn't live to see my daughter grow up and make it to her first birthday..Well here it is! I thought I would never be able to work again and Im back to doing nursing and I HAVE SEEN MND first hand it's nothing comparible to us BFS'ers. Its REAL, its undeniable...I never thought I could work out again and I do spin cycle and I job in the evenings and chase my near 1 yr old around A LOT! I lost a lot through these anxiety ridden dark days including a final wrap to my marriage b/c I was sooo consumed with dying and NOT LIVING.Things worked out for the best...But please don't lose your life like I lost mine. It was so hard to come back1.) STAY AWAY FROM ALS FORUMS- it doesn't help. Not at all and you know this. BIGGEST MISTAKE I EVER MADE. They are sweet people but they ran me off quickly with telling me I didn't belong there that I didnt haev ALS.2.) Believe your Neurologist- I am one that believe to go further than your Internal Medicine doctor/ or GP...because you won't rest until you do.3.) If a EMG is offered TAKE IT..if they SUGGEST it dont freak out , it was done to ease your nerves and to maybe COVER THE DOCS ASSETS or perhaps buy him/her a new car!4.) Don't dwell on the 1 year mark. Yes, It does make you feel better..but the months and day's leading up to it are ridiculous.5.) Self testing? Stop it! It will make you feel weak and perhaps heighten up your twitching! As does exercise!! 6.) Start living not dying! Limit your time to websites EVEN this one.7.) Stay away from the frantic threads...its just fuel for the fire.8.) Doesn't matter WHERE YOU TWITCH- Widespread bfs, even localized w/ a few widespread BFS , HOT SPOT, BFS..NO WEAKNESS NO ATROPHY..9) BELIEVE YOUR DOCTORS then move on..dont try to be a help on this site until you are good and ready. Post your good updates but dont read or try to help others until you KNOW MENTALLY you can.10.) No twitch is more significant than the other- tongues, buttox, vagina's (sorry I've had those) back, shoulders, legs, eye's lips etc...I hope I've helped some. My boyfriend is a twitcher..he gets them bad in his face and jaw line. He doesn't even know what BFS or ALS and Im not going to fill him in. I just laugh when I see his lip flare up like Elvis!!Good day all and God Bless.Lovely

I think for sure 100% that Paxil caused my twitching and when I stopped it, it made it 100 times worse. It's only been about 3 weeks since I've been totally off, so I guess I need to give myself some time. But yes, Paxil did it to me as Lexapro did it to you. Look at this link I found as well. This is exactly what bothers me the most.

Hey DD As always it is great to see you here.kissesMay

Thanks for your post. I really needed that support today cause I am having one of my dark days and freaking out again. The thing is I am totally over the ALS scare. It's the "not knowing" what is causing this that is freaking me out. My twitching started 3 weeks after I started my thyroid medication for hyperthyroidism. I have no idea if it has anything to do with it or not. Some doctors say "yes" but I think they are just guessing. My twitching also started following a very stressful time in my life. My son was very sick in the hospital and the twitching also started after that. So, who knows. Maybe it's a combination of the thyroid and stress. All I know is that this has been the hardest time in my life. I don't think it's ever going to go away. I am trying so hard to tell myself it's benign but something always draws back the fear. Anyway, thanks for your post. It was very helpful.

Barbie,Glad I could help. If I just help one person then that's enough for me. I understand how you feel completely and I HAVE THOSE days...but they aren't filled w/ tears..I just wish I could sit still and not feel a twitch..but I dont think of dying like I used too.I may cause a lot of controversy but I am a big believer in ANXIETY and STRESS causing the problems. When I look back over my life, I have ALWAYS been a hyperchondriac...and I AlWAYS think and thought I'm dying of something..It changes w/ the season's..You are Well, now rejoice,Lovely

I agree 100% with what you are saying. It is just hard sometimes, that's all. One day you are perfectly normal and the next your body is doing something that it has never done before and nobody can tell you why. That is the hard part.

ABSOLUTELY AMAZING SUE and OTHERS, Those words are MORE THAN ENCOURAGING and words we should take to heart and never look back on. If you can't take those words and take them to the bank..then you simply can't except anything. What a GREAT POSITIVE THREAD....Sue...phenomenol on the words and (Forgive me I'm bad w/ names) but the German shepard Wwjd or what ever those initials are I can't remember..Fantastic Post... Cheers,Lovely

Few things relieve BFS anxiety like a good "old timer" post. Thanks for taking the time to hang around today.

Hey everyone!Came across this thread when looking through the site....I started having symptoms after taking Prednisone (more numbness and burning)... and then I went on Zoloft, and the twitching started. Not sure if either one was or is the culprit (not on Prednisone anymore)... but I truly think medication can trigger odd responses in the body....I have to had that it had been an EXTREMELY stressful summer with moving and having an ugly dispute with our sellers. So I guess it could have been stress too!!!Enjoy your weekend everyone! It's gonna be a nice one in Cleveland!!Andrea

Hello, friends-I just passed my 5-year mark and this evening am experiencing a hot spot on my right thigh. I learned early on not to look at the twitches, but the constant thump was too tempting -- I had to have a look. I just sat there for about a minute watching the non-stop thumping and felt my anxiety increasing. I decided to come to my "forum of reassurance" and look for some helpful postings, which I have found.I think it is important to also provide reassurance to those new, or not so new, to this forum. I am absolutely convinced that Lexapro contributed to my twitches, but at this point, it is irrelevant. The first year was torture, then you adjust. I have non-stop calf and arch twitching and random thumpers and occasional hotspots. The most annoying are the eye lid twitches that pop up once every 6 months or so and stay put for about 4 weeks. My best advice to anyone is to find a way to ween yourself off of research and checking; it becomes toxic. I was obsessed the first year, always sneaking on the computer to research, visiting book stores and looking up the most dreaded diseases. Always looking for reassurance, but usually ending up with elevated anxiety. I have had the usual tests: MRI, MRA, EMG, blood work, neurological exams, etc. Although years have gone by, the twitching is still with me -- most importantly, I am healthy and nothing else has changed. I still have a deep desire to know "why" and "how this happened", but am resolved knowing I may never know. Enjoy the simple things in life and don't worry about these annoying twitches. Best regards-Sean

Thank you for your words of wisdom, Sean. I know time will make this easier for all of us and it is wonderful of you to confirm that. Continued good health to you!

You're welcome, and thank you. Trust me, it will get easier and better. There was even a time when I thought to myself, "I think they are gone." Then, I would look and they were still there. For me, that is what helps me most -- to not look.If you look at my early posts, back in 2004, I was pretty desperate. It's pretty scary stuff, especially early on. I find myself coming here about once, or twice a year now; after 5 years, I still need support occasionally. This forum helped me tremendously and I feel it is important to offer my experience to help those who are new to this annoying syndrome.Take care, and continued good health to everyone-Sean

Sean,I am glad this board still provides you with helpful reassurance but even more glad that you update us, especially after 5 years. Five years with constant twitching and no other major problems. That is golden info to all of us. Thanks.Krackersones

Hi there old timer For sure anxiety is the worst, and google is never your friend.I look back on my worst days and think how could I let that happen to me?I am just getting on with the real problems, not the imagined ones.I don't give up, learning to swim did me a whole lot of good and helped to convince me that although I might not be the next Michael Phelps I am not past it yet. I am getting even worse in my dotage, I am about to take up fencing, and rock climbing, I just do not know my limits.