I Mean No Disrespect But Have A Few ?'s

[affected]

I respectfully request the mods close this thread.

We cannot do anything to reassure you, because with zero understanding of this disease you will just throw back the same thing again and again and it has become completely disrespectful.

Make an appointment and sit down with your doctor, but we are done. The terminally ill and those caring for or recovering from caring for PALS have gone above and beyond to reassure you.

Go in peace and I hope you allow the doctors to help you.

 

[KarenNWendyn]

Your EMG rules out ALS. Congratulations!

 

[Atsugi]

Twiz, you're not listening.


EVERYONE. HERE. IS. SAYING. YOU. DON'T. HAVE. ALS.


You were tested. You were examined.


Here's some perspective: Of the 8 billion people on Earth, 99 percent of them have never been tested for ALS. So, the odds are that some of them, only a few, will get ALS. All those people out there have a very low chance of getting ALS.


Then, there are some folks, like you, who have been tested, EMG'd, and examined. It has been shown that you do not have ALS. So you have FAR LESS chance than the average human to get ALS.

However, your inability to listen to the experts here, and your inability to move on, indicates some very real problems that affect your decision-making and your ability to cope with life. You need help of the psychiatric kind.


Your mental state could hurt your relationships. Your emotional problem could be a life-wrecker. Get it fixed.



Leave us alone. We don't have time to deal with your non-ALS problem.

 

[Twiztidtragedy]

I called my neruo today and he told me he doesn't suspect als but cannot tell me i do not have als until i get another emg in 4 months. Has anyone ever had a clean emg with fascis to months later having als? Cause i have no idea why i am not cleared like you all said according to the emg and all your opinions i do not have als. But the neruo will not clear me even though its clean. Thats why im scared and confused. And i am truly sorry i have pissed you off and offended some of you with my fear and anxiety. Please dont close the thread you all are all i have For hope and information.

 

[Bestfriends14]

A forum full of terminally ill strangers is all you have? No, you actually have 3 children you need to live for and have hope for.

I'd be interested to hear exactly what the Neuro said because you have a clean clinical exam and an EMG with no ALS symptoms. I somehow am not thinking he suspects you have ALS but is covering his butt due to your utter hysterics.

Please, go away now. You don't have ALS and asking terminally ill folks and their caregivers to handhold your fears has become quite self involved. Enough. Stop. For once and for and please go get help for your unfounded fears.

 

[lgelb]

If you want to see if this is the neuro doing CYA or something is really questionable, ask that directly. If that doesn't work or s/he is squirrelly, get a second opinion.

We aren't the same as either, is all. So this is a job for your phone -- make some appointments, put this to bed.

Best,
Laurie

 

[Twiztidtragedy]

I want to start off by saying that I am sorry for posting and letting my anxiety and fear get the best of me. For the past few days ive been scared with intense fear but trying to ignore my twitches and just spend the most time with my family as I can like you all suggested. I Have been getting cramp type feelings in both legs now and muscle stifness, I know i had the clean emg but i have been reading alot of story's on these forums about people having clean emgs 1 and even 2 times to later on getting a Als dx. I have no idea how that is even possiable by the stickies you all post. So a ? i have is. IS it really common to have clean emgs to months later having a dx of "A"? And what about my age range Im 30yrs old is there any statistics for 30yrs old? I know i have to play the waiting game and just hope that i dont develope weakness and it's one of the hardest things i have ever done. I have 4 months unitl my follow up emg to rule out "A" Again. The rabbit hole and vicious cycle of Twitching and the fear of "A" is the most intense fear or Phobia I have expirenced. For all you with "A" and taking care of people with "A" and/or lost someone Im truly sorry and my heart goes out to you all. Im trying to give all my fear and anxitey to god everyday and overcome this Demon. Trying to Live and not let Twitching take me away from my family. Sorry for posting just had a few ?'s and wanted to let you all know I am trying to do everything you all suggested. May god bless you all today and forever.

 

[lgelb]

No, it is NOT common to get a clean EMG and later be diagnosed with ALS. And the 18-39 age group is only 4% of all ALS.

Also as much to the point, your symptoms do not suggest ALS. I don't know if you're still on Ativan but it can interfere with the deepness of your sleep, which can increase your awareness of twitches, weird feelings and the like.

So, no, you don't have to play any waiting games, you don't have to be anxious, those are basically your choices. If you need help implementing them, get therapy or have some long talks with friends or family to illuminate what you are really anxious about, if you don't know already. You don't have ALS.

 

[Twiztidtragedy]

Wanted to wish everyone a happy Thanksgiving! May God bless you and your families. Hope everyone is doing well. Stay safe and enjoy your food and family!

 

[Twiztidtragedy]

No disrespect al but I have not been cleared of Als my neuro said I have to wait 4 months for another emg to see if a disease process starts. It states that on my emg. So I'm still not in the clear Al. I'm still scared still twitch 24/7 in my calves. But I refrain from posting out of respect. I posted today only to give everyone best wishes and blessings. As far as having A I am still in the un diagnosed category. Thank you and have a blessed day Al may God or your higher power heal you and bring happiness to your heart. I am thankful I dont have a Als dx and pray I never receive one.

 

[Bestfriends14]

You do NOT have ALS and have pretty much been cleared of it except for your Neuro covering his butt and telling you to follow up. If you were/are truly worried, get another opinion so you don't have to wait the 4 months. That opinion will clear you, too.

You have been asked on a number of occasions to stop posting until you have an official diagnosis, yet you continue to post quite regularly. I'm sorry, but I do not see the respect in that.

While it's kind of you to wish everyone well on this day, I feel you should look at what it is you need to be thankful for: Not having ALS, having 3 wonderful children, and a long life ahead of you.

So, to concur with Al, please go on your way and live your life. Please do actually have respect and do not post until you have a diagnosis or to update after your next EMG appointment.

Take good care.

 

[Nikki J]

Hey I think you meant kindly so happy TG to you and yours. I look forward to your update after your follow up, fully expecting good news

Peace

 

[Twiztidtragedy]

Also for my clinical exam I dont think I had an extensive one he checked my reflexes and hand strength and looked for atrophy. Does that still count as a clinical? I didn't have to do heel toes or tip toes or heels and didn't stand with eyes closed etc... but he said I was fine

 

[ShiftKicker]

Whoah there buddy- do not take Nikki's kindness as an opening to keep asking questions here. Please do not continue posting here.

As Nikki has asked, do not post til after your follow up.