t gone away. Twitching Since 1998: Help?

OK here's the deal... short version--twitching since Oct '98 everywhere including tongue. I'm hypo-pituitary and on meds for that.

For several months, maybe almost a year, I've slowly gotten hooked low doses of benzos--valium, delorazepam, now xanax and lately have been weaning myself off of it (have it down to 0.25 or .50 mg a day).

Over the years the twitching has subsided quite a bit but hasn't gone away. Still get them in my calves but rarely feel them much anymore unless I'm having a flareup. However they do seem to have settled in on my tongue and are as bad as they've ever been, perhaps a little worse. Not random small twitches, but two or three particular hot spots that kind of tug and pull rather than just twitch. They don't happen on their own, they tend to happen most when i'm tired and stressed and start talking. Only after some kind of exertion of the tongue. I rarely see them in the mirror when the tongue is at rest.

Often talking will set them off and trip up pronounciation sometimes. It's not a weakness thing as far as I can tell, though I've had bouts of speech fatigue since '98 (slowly getting better over time though). I am hoping the localized fatigue commonly associated with BFS is to blame.

I'm pretty sure the benzos make them worse for me. They definitely happen much more when I'm coming down off a dose.

I'm just having some doubts that this is necessarily benign, in my case. The involvement seems to be too much compared to the rest of my body. My doctor here in Italy has said I don't need to see a neuro and that if it were something bad it would have shown itself by now. The two neuros I saw in the US also said the tongue can twitch in BFS too.

I am wondering though if this constitutes a change in my condition and if I should see another neuro. I'd really really rather not. They send my anxiety through the roof. I'm seeing a psychiatrist on Monday for the first time in my life to deal with the anxiety issues and because I understand they have a medical component too, and might know something about the combination of drugs and anxiety etc. I'd like to get off medication altogether and have decided I can't do it all on my own.

Sooo... what do you think... Is it Dr. Jeckyl or Mr. Hyde? I saw Donnie Darko the other night for the first time and feel like I'm also being stalked by the hideous monster-bunny.

Dave I'm sure you're fine. How many times do you need to be told this by a Neoro before you will finally accept it? Everyone at some point has thought maybe they're the one that's slipped through the net and maybe they are the exception that's not benign but NOBODY on this site has gone on to develope the nasty diseases. Dave you've been twitching since 98, if you had MND you'd know by now, and chances are you'd be no longer here. I think going to a psychiatrist is a good move, you have to get your head around this once and for all and move on.

i should clarify... i do still fear ALS but I'm also worried about this being one of the slower variety of neuro diseases, like Kennedy's for example. I realize it's pretty slim odds of it being ALS at this point. But every now and then i admit i have weak moments even on that subject.

Hi Dave – I agree with Morris_M, both about you being fine and that it would be a good idea to see someone to help with the anxiety. Seeing another neurologist is not the answer. There's nothing new about your symptoms. Everyone here knows how you feel, and knows what it’s like to have the nagging doubts. But sometimes even a supportive site like this one tends to feed those doubts when you’re constantly being exposed to fear, anxiety and discussions about horrible diseases. I know you’ve spent time on other forums like braintalk, whatever, and I’d suggest staying away from those kinds of discussions while you deal with this. Focus on nothing but being positive about your health, getting off the medication, and whatever else is important to you. Good luck, and we’re here when you need us.

ydav3yat3s,

You have been at this WAY too long for any serious neuro disease, in my opinion. Even the "slow" cases I've researched never took that long for something serious to develop (including Kennedy's)

I think, like a lot of us, anxiety is a huge culprit. I'm not trying to downplay your symptoms, believe me. I have the same feelings about myself and twitching in any place for long periods of time is enough to drive even the most logical person practically insane.

I think the therapist is a good idea. They can perhaps help you get a handle on all of this. Also, all the med's you've taken over the years -- I (and again, just my opinon) believe they can wreck havoc with our nervous system as well.

Let us know how you are doing.

Ginny

We pretty much have the same BFS-history: My first "attack" happened ten
years ago, and I have the tongue-issue. I have posted to you earlier, so I think you know my story. Now I'm going to give you some comforting words:
First: You do NOT have some kind of slow moving neurological disease. From what I've read, these illnesses (like Kennedy's) only happen with male persons. Well, our stories are SO similar, and I'm a female...You see what I mean?
Second: In my experience, it is the withdrawal from benzo's that make your tongue-twitches so much worse. I used benzo's for about 3 months last year, and quit using them in october. And then the tongue-twitches just exploded! And, in my opinion, that is not a coincidence...It's only recently, over 5 months after I quitted, that they have camled down. The last weeks I've had several days whitout a single tongue-twitch, can you imagine? )
I absolutely think you should stop using benzo's, but be prepared for a possible flair-up... Anyway, it's worth it - in my opinion, the medicine has made my BFS-symptoms SO much worse, and I'm so glad I stopped taking them.
Anyway, I'm slowly getting better day by day. My tonge-twitches have calmed down, so have the widespread twitching all over my body. Several hours can pass by now without me noticing a twitch!! The strange, shaky feelings in my hands and arms are more like on-and-off now, when they earlier were just "on" ) I'm just so glad ) And I assure you: I had SO many neurological issues, so when I can get better, everybody can! You just have to struggle on, there IS hope.

PS: Sorry for the bad spelling, I do not live in an english-speaking country.

Hi,

I'm sorry for the anxiety you're going through. I'm sure you have nothing to worry about.

Please believe the reassurance being given you here. If you absolutely can't shake your worries I think there is a genetic blood test which can completely rule out Kennedy's disease (for you more knowledgeable folk -please correct me if I'm wrong here).

It might be worth it to just totally squash the notion from your mind - (I know how you feel sometimes my anxiety just refuses to quit until I have concrete proof) It's not always rational but this health anxiety thing just seems to have a mind of it's own.

Take care.

I just wanted to add - have you tried Zoloft to help with the anxiety?

Thanks all, especially gus, it helps to have someone else out there with the same symptoms.

the psych gave me something in the same class as zoloft, i think the braind name is celexa or something like that, saying apart from depression it also treats compulsive disorders... since starting that i've noticed i don't spend as much time thinking about it in such a dark way, and i end up checking myself for atrophy far less than before. the twitching is still bad, but i'm still weaning myself off a low dose of xanax that the psych said is "like nothing", only about .25mg a day in the morning. i still think, like gus, that there is a connection, that the benzos cause more tongue twitching. mine didn't nearly as much in the years between taking benzos... they definitely are worse on the drug. i think tomorrow i'll try to cut them out all together... have been waiting for the celexa to have more affect.

anyway thanks for the words of support. my speech still feels clumsy at times, sometimes it seems like i don't quite pronouce a few things right, but i hope that's only due to the tongue twitching, that the twitching will affect the bulbar muscles like they seem to affect others (namely a little fatigue).