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Thoughts on this please

PostPosted: February 25th, 2015, 2:15 pm
by joycecaroll
Oh God how I wish for this to be my last post... Knock on wood.

Okay so as some of you know I'm completly OCD-super-irationally-obsessed with bulbar ALS. I'm thinking I'm still in the hyperexcitibility phase and that's why and don't have any weakness yet.

Timeline:
July: felt a few tongue twitches one day. Freaked out.
August: Had not felt any more tongue twitches since that day in July, but was scared and got an EMG of my tongue. Clean.
Sebtember: Tongue twitches return and are now daily.
February 2015: get a clinical by my GP. She is concerned as she noticed the fasciculatiuons on my tongue and order a EMG.

I'm getting the EMG in March probably. If this is clean, am I in the clear then? It's just been about six months since the twitches became daily. I just wan't to let this go, go on with my life and leave you guys alone. I'm so embarrassed when reading all my post's in this forum.

Re: Thoughts on this please

PostPosted: February 25th, 2015, 3:12 pm
by misterjuanperalta
Request tongue and trapezius EMG.

Re: Thoughts on this please

PostPosted: February 25th, 2015, 6:29 pm
by SecretAgentMan
joycecaroll wrote:Oh God how I wish for this to be my last post... Knock on wood.

Okay so as some of you know I'm completly OCD-super-irationally-obsessed with bulbar ALS. I'm thinking I'm still in the hyperexcitibility phase and that's why and don't have any weakness yet.

Timeline:
July: felt a few tongue twitches one day. Freaked out.
August: Had not felt any more tongue twitches since that day in July, but was scared and got an EMG of my tongue. Clean.
Sebtember: Tongue twitches return and are now daily.
February 2015: get a clinical by my GP. She is concerned as she noticed the fasciculatiuons on my tongue and order a EMG.

I'm getting the EMG in March probably. If this is clean, am I in the clear then? It's just been about six months since the twitches became daily. I just wan't to let this go, go on with my life and leave you guys alone. I'm so embarrassed when reading all my post's in this forum.


What is stopping you from letting this go and moving on with your life right now? The mentality of 'what ifs' does not go away just because you got an EMG. It goes away when you take the steps to end it. It is your mind. Learn to work with it and change your attitude for the better. There are tools and techniques. There is help available.

Re: Thoughts on this please

PostPosted: February 25th, 2015, 8:08 pm
by misterjuanperalta
His information is helpful. Definitely consider it.

Re: Thoughts on this please

PostPosted: March 4th, 2015, 6:27 am
by joycecaroll
I have an appt. with my neuro in a week, and in 2 weeks I have a EMG. I'm so nervous. On one hand I'm scared they'll find something, on the other I'm scared I won't be able to relax even if they don't.

It's been 6 months since I started having fasciculations on my tongue. Is that enough? I read somewhere you're suppoused to wait 8 months. If the EMG and clinical is clear, is it safe to let this go then?

I really need suppourt right now. I'm so scared I don't even know if I can go through with it. Oh, and I'm starting an internship at a neurology unit next week. The irony.

Re: Thoughts on this please

PostPosted: March 4th, 2015, 8:24 pm
by misterjuanperalta
The question should be, how many months before I control my anxiety? At the end of the day, our mortality is real. Once we can accept that, we are free and can enjoy life. I am struggling too. It's hard for me. I am hoping you are well, as much as I hope that for myself. Our anxiety is directly linked to Control, which is very limited in reality, yet we think otherwise. Best wishes.

Re: Thoughts on this please

PostPosted: March 4th, 2015, 8:32 pm
by SecretAgentMan
misterjuanperalta wrote:The question should be, how many months before I control my anxiety? At the end of the day, our mortality is real. Once we can accept that, we are free and can enjoy life. I am struggling too. It's hard for me. I am hoping you are well, as much as I hope that for myself. Our anxiety is directly linked to Control, which is very limited in reality, yet we think otherwise. Best wishes.


Very wise words. I like the meme you see on social media every now and again that says "Relax. Nothing is under control." The only control we really have in our lives is over how we react to things and how we let events, circumstances, and situations affect us. Going with the flow is about as much control as we have and the less you try and fight that current the more enjoyable your ride will be.

Re: Thoughts on this please

PostPosted: March 4th, 2015, 9:22 pm
by emmie.s
I am so sorry you are going through this. All I can do is offer my positive thoughts and prayers. No matter what we say, you will feel what you feel until you yourself decide that enough is enough. But since you ask, no, you do not have bulbar. Even without the EMG I would say you should let this go. So many of us have tongue twitches. I had some today and I can induce twitches. Its called BFS. You have twitched long enough without weakness and bulbar is so fast-moving that by now you would've had other significant symptoms. Take care.