Weird Sensations in Mouth Since July

[FabulousOne]

Well, I've been through this since the beginning of july : weird sensations in my mouth, tongue buzzing, prickling, aching, you name it, I have it. Sometimes when I talk for too long my tongue feels weak. Actually, I still can chew, talk and swallow without problems, but I definitely have this problem with my tongue. The lump in the throat sensation comes and goes, and does not worry me anymore, nor do the body twitches, which I have had for 14 months +. But everyday I wake up thinking : ok, what will it be now ? Sometimes I'm almost fine, sometimes I think I won't be able to talk intelligibly, or will have problems swallowing, etc. Is it only in my mind ? I'd so love to be sure than after 2.5 + months without real changes, bulbar als CAN'T be a concern anymore. However I have these strange feelings on my tongue every single day - even if it's not always the same sensation, and even if my condition, as far as I can tell, has not really worsened since july. Anyone can relate ? Or give me some input about bulbar als - and its progression along time ? Sorry to be stuck in here again. I hope to be better soon. It's a struggle.
Fabrice

 

[Mattcoatl2]

Fabrice,

Perhaps I'm not the best one to respond, as I still have tongue problems. But the examples I've read on here include someone who wasn't able speak after three months, whose friends couldn't recognize what they were saying, another whose family members couldn't believe the rapid daily progression, and a person who others thought was drunk after a few months due to slurring. My neurologist pointedly tells me the key is the loss of muscle/strength - not stumbling over words or sensations. And you describe exclusively sensory symptoms, which isn't like a MND.

I know anxiety plays a huge role for me. I'm constantly awaiting the next time I'll trip over my words. It 'feels' like I'm not going to be able to get words out or that it's more effortful to do so. I wish you luck and if you gain any insight into dealing with this anxiety beast, let me know.

Matt

 

[EyeoftheWild]

Hi Fabfab:

I know virtually nothing of bulbar als because I have deliberately kept myself ignorant. In fact, I really pay very little attention to the finer details of that illness. One of the reasons is, that at the beginning it only served to scare me, and then later I refused to believe in it. I don't read posts about the differences in twitches, or in percentages of this or that, or even in sx of this or that. When one contracts BFS, one needs to step back from those things which cause emotional turmoil. Engaging the mind in "what if" scenarios quickly stops the healing process. We create a prison, with a tiny window far up on the wall, beyond our sight, and we can only wonder when we see the little patch of blue, if we will ever step out into the wider world again. Paul Verlaine wrote a poem called "Prison." Verlaine, as you may well know, was imprisoned because he tried to kill his lover Rimbaud. I can only remember the last line of the poem but he say," what has become of my youth." I feel that way about BFS, if I dwell too much on the everyday sx then I wonder what has become of my life.

I have taken note from your past posts to others that you are a beautiful soul. That you really care is very evident. I would counsel you to forget about learning more about als, and set your mind to what is real in your life, right now. Your wife, your child and your magnificent self. Yes, that is how you must view yourself. Why not? Bfs.com shows the power of positivity, the power of empathy, the power of love. My God, this is so real, so deliciously real that it is to this end that we must turn our eyes.

Have I dealt with your specific symptoms, no, I didn't want to. They exist, yet they are entirely benign. I understand your fears, yet I can see that you are so very well. I am sending you a healing ball, one that can cross oceans. It will find you because it is meant only for you. There, it is sent. I trust it will touch you, as you have touched others here on this board.

Basso