Desperate not to be scared anymore!

[clichti]

Hi All,

Been skulking around the forum for two months. As many others have stated, the last thing I want to do is to inadvertantly offend anyone, so please excuse anything in the post that might do that. I have so much admiration for all who are suffering from this disease, as well as the caregivers. The positivity you all seem to maintain in the face of adversity is really incredible.

So, what's my story? Well, I've always been a bit of a hypochondriac, so it was probably just a matter of time before I became afraid of ALS. My situation started this summer when I began experiencing widespread twitching, coincidentally after being prescribed an anti anxiety mediation called Lexapro. I immediately entered my symptoms into Google, and bam. Was I didn't know much about this disease, except that my friend's mother passed away from it five years ago. I now wish I could erase much of the knowledge I have gained on ALS - ignorance really is bliss.

So, I begged my GP for a neurology referral. Got it. Had the consultation late August, was given the all-clear (along with a strong recommendation to treat my anxiety). But, that didn't satisfy me. So, back to the GP, begged for an EMG referral (the neurologist wasn't even prepared to do one). They agreed. Had my very thorough EMG done. Totally clean. This was mid-September.

So, how am I back at square one? After the EMG, I was temporarily able to stop being scared about the twitching. But, in the last couple of weeks, I've began focusing my worries on a perceived issue with my upper left arm - sore? fatigued? No surprise, twitching has gone haywire, including the "buzzing" sensation I seem to get in the arches of both feet, and now the left hand.

From what I've been told my several doctors, people who are weak know they're weak, and they don't have to test themselves to find out. But am I confident? No way. Actually, I've scheduled another EMG for the Thursday after next.

Thoughts? Words of wisdom? Please, yell at me, tell me I'm an idiot and to smarten up, if that's what you think...tell me to get the heck off of this forum, anything, just let me know what you think

 

[Al]

Yes you are foolish. You don't have ALS. Best advice is to stay off the computer and get better anxiety meds.

AL.

 

[trfogey]

You'll only be free of these worries when you decide that you're tired of them. You've got nobody to blame but yourself for how you feel.

Enjoy your stay here on the forum.

 

[Alyoop]

Who ever has agreed to do your second EMG on the insistence of an over anxious person, so soon after a clean one, should lose their liscense. It's preposterous! They are agreeing to do it for the money. Corrupt.
Believe your doctors, you have no symptoms that point to ALS and have been cleared by a neurologist. Get on with your life and see a psychologist to help with the hypochondria.
Cancel the EMG while you are at it.

 

[rose]

Did you follow through with the 'strong' recommendation to treat your anxiety? Seriously, if you haven't, why not? Why would you choose to remain scared of something you don't have?

The best thing you can do for yourself, for others who love you, and for forum members like us, is:

1) Stay off of the internet Googling ALS symptoms, and other medical symptoms. You've already had doctors tell you where the problem originates.

2) Find a doctor who is willing to work with you as far as trying medications till you come up with one that helps the most,


3) Consider some sort of therapy.

Life is too short. Too short for you, to not be enjoying life (you could get hit by a truck tomorrow, no one has any promises as to how long they will be in this world)

And, it's too short to waste our time too.

You know what? Lots of anxious posters will read this type of advise from us, and publicly agree, they'll write back and say, 'yes, I know, I know, I will move on' — and then they may not post for a long time, or ever; but yet, they'll be right here every day, or every week, reading newer posts, reading older posts.. reading posts in the forum archives.

Does their anxiety go away? No, of course it doesn't. Its like the overweight person who's supposed to be on a reducing diet, and yet they secretly sneak cake and potato chips, and whatever else is their own personal weakness when they think no one is looking.

Good luck to you, I hope you're able to move on.

I agree with Aly, cancel your EMG, spend your time you would allot for it on something that will actually help you.

 

[clichti]

Thank you all so sincerely for taking the time to read my post, which is probably a carbon copy of so many others you've read. I had a bit of an idea of who was going to respond, from having read similar posts, and what you've said is really what I needed to hear. So many excellent points raised.

It's funny how well I can apply my logic to other people's situations, but how hard it is to apply that same logic to mine.

To address a couple of questions/points, yes, I have absolutely followed up on the suggestion to treat my anxiety. I have been seeing a psychologist since September, but thus far, the only thing I'm seeing is my wallet becoming markedly lighter. She's doing cognitive behavioural therapy with me, which is perhaps not the right kind of therapy, as it doesn't address underlying causes of anxiety. But, in her defense, I suppose that I must first accept an anxiety, not ALS, diagnosis in order to have any chance of being successful in my treatment.

I was surprised that they were willing to schedule another EMG so soon too. Of course, this is where the twisted logic comes in - instead of thinking to myself that the motivation is monetary, I think "oh my goodness, if they're willing to test me again now, there must be some cause for concern. Maybe I DID develop the disease, from nothing right through to actual symptoms in two months".

So again, I thank you all so whole heartedly for your words and support. This has been a very difficult journey for me, which I hesitate to even say, given who I'm speaking to, but each situation is relative, I suppose.

 

[TedH5]

I could have stopped reading when you said you were a hypochondriac and told you that in fact you do not have ALS. This is why insurance costs keep going up. You do not need a second emg, heck you did not need a first one. Please treat your anxiety; I know you said you are see a Psychiatrist but I think you should ask your Dr for xanax or zoloft or something like that. Obviously I am not a Dr just giving you my opinion.

Life is short please do not waste yours by stressing over something that is clear as day that you do not have. I would advise you that it would be much healthier and better for you anxiety if you stayed away from this forum but since you said you have been here for two months already and I am sure read dozens of other posts similar to yours you had to have been able to predict the responses so I am sure you will ignore everyone's responses. If you don't listen to us, I hope you listen to your Dr's who are experts.

 

[trfogey]

So again, I thank you all so whole heartedly for your words and support. This has been a very difficult journey for me, which I hesitate to even say, given who I'm speaking to, but each situation is relative, I suppose.

You haven't the slightest clue what a "difficult" journey life with ALS really is or you would never have posted this load of self-pitying and self-indulgent claptrap. On the relativity scale, you've had a raindrop strike your hand, while we are literally up to our necks in the flood.

It's very easy to pretend to believe that you might have ALS, especially when you know that there isn't the slightest chance that you really do have it.

 

[clichti]

You're absolutely right fogey, I have not the faintest idea of what you've had to go through, and I'm so very sorry for obviously not giving my head a shake before writing that comment.

Grandpa - hello to a fellow Ontarian! I see that we live quite close to each other.

 

[lpcarr]

Just remember when you are scared and anxious, your body can do many strange things such as twitching and pain. You become so over aware of so many little things that you may think you are dying or have some horrible disease. I suffered from depression and anxiety and that was before my husband was diagnosised with ALS. I got on the right meds and now I am fine. When my husband was diagnosis I did alot of reading on the internet too. Much of what you read is bogus. That's why this forum is so important to all of us cals and pals suffering through this horrible disease. We are muddling through together, helping each other with our experiences and the knowledge we gain. Try to relax....you probably don't have als. The body does strange things under stress. The meds will take a while to take hold. Stay on them and focus on the
positive things you can do. Deep breaths, get outside, do anything to take your mind off yourself. Good luck to you. Pam

 

[Al]

Clichti, I'm in Orangeville and go to Sunnybrook ALS Clinic.


AL.

 

[clichti]

Pam - thank you so much for your message. My thoughts go out to you and your husband.

You're right, there are so many bogus things on the internet. Such a travesty, as it really does make anxiety cases like me go off our rockers. I know I probably don't have the disease. Actually, I probably for sure don't have it, but when anxiety and fear are the monsters, it's hard to convince yourself of that.

The body does do strange things under stress. I've learned that to the utmost extent latetly! I wish you all the strength in the world in standing by your husband. You are a wonderful woman

 

[clichti]

GrampAl - the Sunnybrook Clinic is the absolute best, from what I know. My friend's mother was diagnosed and treated there. You couldn't hope for any better care, so good on you Just nice to see some other Canadians on the site

 

[Al]

Thiss site is owned and ran by Canadians. Barrie Toronto and me. I've been at Sunnybrook for 7 years I think.

AL.

 

[clichti]

I had no idea that this site was run by Canadians - wow! How are you finding Sunnybrook? Do you like your care there?