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Re: Tongue twitches - can be felt

PostPosted: September 9th, 2014, 3:59 am
by joycecaroll
Well first of all I'm a nurse with medical training and have been reading a lot about the subject before asking questions.

Second, I don't get the angry tone here? I'm sick! I have severe OCD and was just admitted to the hospital because I'm suicidal. That's how scared I am of ALS.

I take strong drugs and go to regulair therapy in order to try and control my anxiety. I do my best every day.

Re: Tongue twitches - can be felt

PostPosted: September 9th, 2014, 6:58 am
by Yuliasir
Joyce,
so sad is to read that your OCD is so severe.
And you know that it would be a long way out - but it still would be, I know. I am long term GAD and, despite on GAD seems to be far easier compared to OCD, I know what a tortures it may be. Personal daily hell which is always here.

It is a very strong urge in many of us (me too, despite all my kmnowledge and experience) to say something like :"you MUST quit those thoughts, you MUST know you are oK" but this is only because we really forget that we are not ok. Neurologically - maybe yes, but not psychologically.
Our problem is not ALS and not a decision whether we have it or not. I do not know if BFS induces OCD/GAD or results from it, but I am sure our main problem is a mood disorder, and treating that is a key to get releif for most of BFS symptoms (which I mean are not twitches or cramps but persistent fears).

I hope you are in the right hands now and your OCD would be treated both medically and psychologically.
Hugs
Yulia

Re: Tongue twitches - can be felt

PostPosted: September 9th, 2014, 7:23 am
by joycecaroll
Yuliasir wrote:Joyce,
so sad is to read that your OCD is so severe.
And you know that it would be a long way out - but it still would be, I know. I am long term GAD and, despite on GAD seems to be far easier compared to OCD, I know what a tortures it may be. Personal daily hell which is always here.

It is a very strong urge in many of us (me too, despite all my knowledge and experience) to say something like :"you MUST quit those thoughts, you MUST know you are oK" but this is only because we really forget that we are not ok. Neurologically - maybe yes, but not psychologically.
Our problem is not ALS and not a decision whether we have it or not. I do not know if BFS induces OCD/GAD or results from it, but I am sure our main problem is a mood disorder, and treating that is a key to get relief for most of BFS symptoms (which I mean are not twitches or cramps but persistent fears).

I hope you are in the right hands now and your OCD would be treated both medically and psychologically.
Hugs
Yulia


Thank you so much for understanding. It truly means a lot to me!

OCD is never easy on anyone and the way to recovery is long. I was diagnosed at age 8 (for severe HIV fear) and turning 25 next month I'm obviosly still very sick. I'm on antipsychotic withdrawal at the moment which adds to my OCD.

Sorry for the self exposure but I feel obligated to explain my troubles with letting this go, as well as my addiction with reassurance. However I will stop posting in that manner as it makes people angry, and will try to find other ways to help my self.

Re: Tongue twitches - can be felt

PostPosted: September 9th, 2014, 9:21 am
by Yuliasir
I am suffering since 6. I had fears of rabies in terms of health mostly, but my main fear was a separation one so I had it almost daily waiting my parents nd later my husband and my daughter to come home at the end of the day... and I lived more or less stable until 37. At 37 I was a wreck - I had a family, a job, a child, I should enjoy my life but I was nearly at the edge of suicide.
Psychotherpay had saved my life, and when I was in BFS - I had to use medication too.

treatment is possible and you are young enough to get out of the dark.
Hold on my dear.
Have my hand.

Re: Tongue twitches - can be felt

PostPosted: September 9th, 2014, 2:15 pm
by Little Lost
Joyce keep strong. Being a nurse or working in any form of clinical medicine is hard. Illness and diseases are disproportionately represented in your daily life, as you see and deal with patients everyday. The world can become skewed. We always look out for signs of health anxiety in medical students, normally around foundation year 2, it is so common.

You are doing great and asking for help must have been a big step for you. I do not have the experience that Yuliasar has, she is brilliant on this forum. I just wanted to say from one health professional to another you just keep going.

Hx

Re: Tongue twitches - can be felt

PostPosted: September 10th, 2014, 4:01 am
by joycecaroll
Little lost and Yuliasir - thank you SO much for this support. It means so much.

As I had another tongue fasciculation yesterday I'm having a really hard time at the moment, and your support is priceless. I'll keep being strong as I want to be healthy to be able to do my job, which I LOVE.

Re: Tongue twitches - can be felt

PostPosted: October 8th, 2014, 12:03 pm
by joycecaroll
Sorry, but I need to vent this. Totally freaking out. The last month I've been getting the twitches daily. Everytime in a new spot on my tongue. What worries me the most is that I really don't think I have BFS. I don't twitch very much in other places. Sure, I've had some hot spots a few times, but I think that's normal.

Re: Tongue twitches - can be felt

PostPosted: October 8th, 2014, 12:36 pm
by elliottok
joycecaroll wrote:]What worries me the most is that I really don't think I have BFS.


Joyce,

Your doctors have diagnosed you with BFS - why won't you believe them? You don't have to twitch every where all the time to have BFS. Some people only twitch in their calves. Some people only have upper body twitching. Some people only have lower body twitching. Some people, like you, mainly twitch in their face or tongue. There's no typical BFS case. All BFS means is that you have fascics somewhere on your body that are benign in nature. Please trust your doctors - I can assure you that once you get over this anxiety, your twitching will get much, much better.