DIAGNOSED YOUNG FEMALE

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diktatura1941

New member
Joined
Oct 31, 2021
Messages
1
Reason
PALS
Diagnosis
10/2021
Country
LT
City
Kaunas
Hello,

On Friday i was diagnosed with ALS. I gues i won a one million dollar lottery, as it is written in this forum that young people to have als a chance is one in a million.

The most what's angry is that i was banned in this forhm three years ago! How does it started?? After very strange flu that i was sick three weeks, I began to twich everythere in my body tongue face etc. and i had clean emg i wrote really a lot posts in this forum then and i was banned! I forgot about ALS because i was too young only 29 years old female, my emg was clean and again i was diagnosed with bfsš.

I always knew that something isn't right with me. I have done tons of tests everything was ok. So i lived with my ill body and stopped going to doctors. I guess now that my als was so slow progression that i only felt twitches not weakness.

I created a family and gave a birth to a beautiful boy named David during that three years but after delivery my strength was decreasing with every day also i had two surgeries that also worsened my health so bad. I guess those things accelerated als progression, i began limp with my right leg and slurring my words. I cried inside because i knew that the hell was back. I have done this month two emg's and they show so many bad things and i was given als diagnosis.

The most ironic thing that everyday what i will fail to do my son (he is now a year old) will learn to do and i will leave him so young that he won't remember me :(( that's so sad.

My situation is really not traditional. I guess who is diagnosed with bfs have a chance later to hear an als diagnosis especialy if als i slow progressing.

Sorry for bad english and thanks for reading.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,161
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am very sorry for your diagnosis. I trust it was confirmed by emg and 2 specialists

your ban back then was for creating 2 accounts at that time as multi usernames are specifically against terms of service and an automatic ban. This is you, yes?
 

Clearwater AL

Very helpful member
Forum Supporter
Joined
Aug 28, 2013
Messages
2,182
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
If you might share... where (ALS Center) and who (Neurologist) and the Summary/Conclusion
at the bottom of your EMG confirming diagnosis. It would help your case to us.

To be diagnosed on Friday and return here on Sunday isn't really a lot of time to prove us
wrong in banning your account. It apparently has been in your craw for three years.

No... a diagnosis of ALS isn't winning a million dollar lottery. ALS is a terminal disease.
And being diagnosed with ALS at 32? years of age after previous clean EMGs is
probably in the million to one odds.
 
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Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,397
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
I'm so sorry for your diagnosis. What are the next steps for you according to your neurologist? Were you prescribed Riluzole and Edaravone? Yes, if you could post the summary/conclusion part of your EMG, we could better help you navigate through this uncertain time.
 

Mary2

Distinguished member
Joined
May 1, 2021
Messages
135
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
I am so sorry for your diagnosis. I wish you the very best. Are you still able to walk or do you use a wheel chair? Will your family be providing assistance for you and for David? I know you must be overwhelmed and sad about the diagnosis. I am so sorry.
 
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