Help for Chronic Twitching?

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tearsneverfall

Well-known member
I have been twitching for 7 months almost. I need some help in getting past this and moving on. I have had three neuro exams and my neuro insists that I do not need an EMG and that I have excellent strength.

I have been on Lexapro for almost 6 weeks and am on about 1 to 1.25 mg of Klonopin daily.

I have a great day and then I wake up the next and look at my child and fall apart at the seams with guilt. I feel disconnected from her and I feel like I am a changed person because of what has happened to me and that I wil never get past this and be happy again. Ever!

Some days I can do a lot of stuff and others all I want to do is sleep and lie around the house.

My husband is supportive but he is getting weary of the tears and the fear.

I don't even have that much anxiety anymore. I really don't. It's like I just can't get past what this has done to my life.

I am in therapy and I am starting meditation with the therapist next week but I feel like I have lost a part of my soul that I cannot retrieve.

I am desperate for some advice from those of you who have learned to accept this and move on.

My husband thinks that I am still feeding my anxiety by coming to this site too and that if I stop it will be out of site and out of mind but I have such a hard time staying away.

I don't know what else to do. I feel lost in the ocean with no life perserver. I can't figure out why I can't accept what my neuro said and move on with my life. I was a happy vibrant mother of a beautiful 2 1/2 year old and a happy wife of a wonderful man.

I feel like this has stolen my soul!

Help!

Karen
 
Karen,

I can relate to all that you said in your post, even when there is a clear assurance of no ALS, BFS remains and is bothersome and still frightening. Even though Klonopin works well for me, I feel like I'm now on this drug which sort of changes the person that I am and I look back to the months and days before the twitching onset as sort of a before/after marking point.

But,...and I say this in all seriousness, I am incredibly glad that I have BFS and not ALS. I am grateful. Not simply because I am not facing the heavy burden of ALS and the heartbreak of it all, but because this whole experience has helped me to face my own mortality. All that rehtoric about life not being a dress rehearsal and that today is the only guarantee you get makes sense now. I pray more now. I notice things now, I look into my children's faces longer, I contemplate the purpose of my life and try to fulfill it. I try to be patient and loving with my children and husband and to let all the unnessary aspects of life fall away. I guess in some very ironic way, BFS has symplified my life and allowed me to see in technicolor what is important to me.

This is not to say that I don't become sometimes irritated by it or depressed. When I get a persistent twitch it gets me down. Also, my second opinion appointment at the UCSF center was delayed a few weeks and I am anxious about all of that. I have to go back to my general but experienced neuro who is convinced this is BFS and try to get him to do a more complete emg for this UCSF appointment I booked on my own - he's going to think this is all nuts, but I need it to truly move on.

I think it's okay to fall apart now and then, but the truth is that people all over this world live with burdens much more heavy than this one. Life's guarantee is that we will all encounter some disease, illness or condition and most of us will carry on with it. This is hard to accept when you're young and easier as you age, but it is the reality of life all the same.
Sorry if this has sounded preachy.

Just a footnote, I need this forum right now and so I use it. It sometimes does feel like I'm dependent on it but it gives me a quick fix from a community of people I need right now. God willing, one day, I'll be able to post entirely to support others rather than out of the need I have to be assured.

Ava
 
Hi Karen,

Please scroll down under 'the support group' and open the thread of postings I started with the heading 'just got back from a neuro visit'.
I wrote a lot of stuff in there which I hope will help your frame of mind.

Stay strong--it will pass...

Amy
 
Karen,

First I would tell you to either demand that your neuro do an emg, or I would go to a different dr. I say that being pretty confident that any test will be normal, but I don't think you will be satisfied with any dx until you've had an emg. So make it happen. One warning though, after you get a normal result, the relief will be short lived unless you finally get the anxiety under control. I would also talk to your psych. about the different choices you may have in regards to anti-anxiety meds. It sounds like the lex. isn't helping that much. Finally, I think that time will really help you get over the fear associated with this crap. If you can logically process the fact that you have twitched for 7 months without any significant changes in strength or reflexes, you should find some relief. Keep reminding yourself of that fact, and focus on the positive message that sends. No weakness, atrophy or anything else after 7 months is pretty *beep* re-assuring.

Hang in there, it will get better.

Gary
 
Hi Karen,

A couple of things here...please don't take this as preachy, either.

First, listen to the doctors. Let them do the diagnosing. I know this is hard, I've been there. But, an EMG will not buy you anything if your anxiety is not first under control. My GP refuses to even refer me to a neurologist, and as it turns out, he was right. I've been twitching for 7 mos. now...and you know what? I'm still fine. He has done 3 neuro exams on me, everything is normal. I've had a complete physical...normal again.

My point here is this, this disease, as we all know, pretty much sticks out like a sore thumb. My GP said he diagonosed a 70 year old women 2 months ago...he referred her to a neuro, but just for confirmation, he knew what she had almost without a doubt.

So, don't let your anxiety take you to places you don't want to go. Do the math, run the numbers, read the posts here. I don't think demanding an EMG or seeing another neuro is the answer. Believe me, I'm speaking from experience.

Listen to the docs. Listen to your own voice of reason. Try not to hyper-focus on the twitching as it WILL get worse. Hot spots and random twitches can go gangbusters if you think about them a lot, ask ANYONE here.

Garym is ABSOLUTELY right, twitching for 7 mos. with no weakness and other ominous signs? Benign, can't be anything but.

My two cents, Karen.

Take good care and good luck.

Brian
 
Thanks for all of your posts. I didn't take any of them as being preachy. Actually I need to be preached at occasionaly so it will sink in. I feel better than I felt earlier. I think this thing has my PMS really screwed up because it is that time and I think about it more, cry more and twitch more. My daughter loves to throw pennies in the fountain at the mall so I asked my mom to go with us so I could take her. I bet I rounded up 10.00 worth of pennies and she had a ball!!! She would have spent that much or more at Chucky Cheeses and she had just as much fun so it was worth it. I took her for a cookie at the Cookie Company afterward. She got one with Elmo on it. My mom and I talked a lot and I got my mind off of this crap and after I dropped her off I dreaded coming home and settling in for the night but at least I can see that I can make myself forget about it even if it's only for a while. I guess I have to force myself to do things like that more often and maybe with time I will think about it less and less. I do think logically that something else would be going on by the 7 month mark but part of my problem is the guilt at what this has done to me and my family. But I let it happen so I have to pick up the pieces and put it back together.

Thanks again and more advice is welcome from anyone else

Karen
 
I think Brian is right.

It makes perfect sense that anxiety or other things can cause muscles to twitch. If it wasn't for the connection to ALS, no one would be concerned --annoyed, but not concerned. And twitching is only one small piece of the puzzle of ALS. Just like a headache is only a small part of a brain tumor -- yet we all get them.

I am not understanding why anyone who has twitched for so long (6 months and beyond) still fears the disease. It is so, so, so rare and on top of that so, so , so rare for you to even twitch at all as your first symptom. I think most folks should feel comforted after a couple of months. Majority of cases are very rapid. Most patients are quite older too. And ALS sticks out like a sore thumb -- he is right! There are PLENTY of folks who twitch and never see a doctor. I guess they figure if I fall over, then I will go.

It is the hot spots that scare me, I admit. I used to twitch all over (one hitters here and there) and it NEVER scared me. I know calves are notorious and if my neuro says BFS without an EMG -- I plan to accept it and move on. I really don't want the test. And in another three months, I really won't want it!

Many folks here dwell on the highly unlikely (the 1% of the 1%) and for some reason cannot let it go -- it's an anxiety problem.
 
Karen-I know exactly how you are feeling. Even after 4 neuro's and 2 emg's I am still a train wreck. I think the only answer is to deal with the mental issues. It's good you're going to therapy. I still have to do that. It may take time but you will get better. You must force yourself to LIVE. When I cried to my husband he said well you may as well be dying because you are not living your life.
 

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