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suzannj

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Hi Everyone,
I used that title because that was my original post’s title. I was asked to please come back and report on test results, because I guess some people fly-in and post concerns, but then do not come back and say what results they had.

For everyone like me, ABSOLUTELY TERRIFIED.....and 99.9% convinced that they have ALS, I'll give a quick review of what I was (am) experiencing that led me here in the first place:
- 37 years old; twitching (fasciculations) began ~5 months ago, localized at first and then body-wide almost all day and night; Cramping that started in my r.lower leg, but then also migrated to my feet and hands; Weakness / extreme fatigue in my r.lower leg; Intermittent myclonic-type jerks; PERCEIVED muscle atrophy in my r.lower leg....and of course obsessive reading about ALS, and utter and complete panic.

Please note that Wright and a few others said that my symptoms did not sound like ALS. I could not make myself believe that though, especially after the leg weakness set-in. I was crying multiple times a day everyday and felt like I was trapped in a surreal nightmare. My baby is not even two. My husband made me promise on our son's life that I would stop reading and/or posting on the Forums, and stop reading about ALS until I saw a neurologist, so I did as he asked.

Fast forward a bit, and to truncate a long story as much as possible: After a very thorough exam including a lot of blood tests, neurological exam, EMG & NCV, MRI of my brain, and another neuro exam, a local neurologist at one of our Buffalo ALS Clinics said that he is, "100% sure that (I) do not have ALS". In the end, he said he's not sure what is going on, but neurologically I am fine. He said if we have to put a label on this it would be Benign Fasciculation Syndrome (BFS) but that he sees people literally every single day who have symptoms similar to mine, or other "odd" seemingly neurological symptoms and are not "sick" with anything. He said this could continue, or stop as suddenly as it started. The body is a sometimes strange and mysterious thing.

I of course was elated on a level equal to when I found out I was pregnant, and yet there was a part of me that felt like I didn't / couldn't believe him after thinking for so long that I definitely was in the early stages of this horrific disease. And also a larger part of me that cried thinking of everyone who has received, and will receive, the opposite news that I did and cannot “wake-up” from their nightmare.

This brush with ALS has changed me, and I was shocked at all of the people in my life who did not know what ALS is, and what is does to people. I have been changed by this experience. I am now volunteering with ALS Guardian Angels and will continue to do so. My annual allottment of charity donations will from this day forward be sent for ALS research, and I will never, ever, forget how fortunate I am.

I have to leave these forums, as I find myself reading the posts again and feeling uneasy that my neurologist was wrong as I'm still twitching and cramping, albeit a lot less. The other odd thing? It could be just a huge coincidence, but my right lower leg – the one that was SO weak I began using my left foot to drive.....is now fine. It is utterly amazing how powerful the mind body connection really is.

I will pray every night for the rest of my life for God to grant medical researchers the wisdom to find a cure for ALS, and to give peace, hope, strength, courage and fortitude to every person fighting this battle.

Thanks everyone for being so incredibly supportive every time I posted. Take great care, and I hope this long-winded message helps someone else.
- Suzann
 

Shane the Pain

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Lucky You !

Hi Suz:

congrats on the great news !

i got 4 kids, the oldest is 9

so i'm happy 4 you and jealous.

Shane
 

awieleba

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suzann,

Thanks for posting! And that is great news for you! I am going to try to follow your lead on this. I forget to mention that I get those myoclonic -jerk things as well, very stange.

Anyway, take care of yourself. Post here and there so we know you are doing good. It will help me know that someone has the same symptoms as me ( I dont have cramps) and is still doing good.

I agree with you that this has lead me to als charity as well. I use to always work with kids or inner city efforts and for now on it will be als. I want to help in anyway that I can. THe people on this forum are of AMAZING strength.

Take care,

april
 

lydia

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Also in Buffalo

S,

I am also in Buffalo and sent you a private message.

Lydia
 

CindyM

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So glad you decided to share this! Thank you!
 

Shawn

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Feb 4, 2008
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01/2006
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Ontario
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i am very happy for you and your family, Suzanne! I was just like you 3 years ago with a 1-year old. I went through all the tests and got really freaked out by what we read on the internet. I am not as fortunate as you but we live everyday trying to get as much out of it as we can! And we are thankful for the new community of friends we have met through the Forums and ALS Society; they make it so much more bearable!
Cheers!
 

brooksea

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Suzann---thanks very much!

I really appreciate you coming back to let others know of your diagnosed. This will help countless others!

And thank you for supporting ALS Guardian Angels!

I know you love your life and love your family! Your future looks bright!
 

suzannj

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Learn about ALS
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Thanks everybody. I do hope my story helps someone. I'm still twitching and cramping.....and trying not to be worried anymore. Boy it's hard! The volunteering with ALS Angels looks like it may already be paying off. My "assignment" is to look for people to donate their minivans for sale so that they can be made accessible for PALS and their caregivers and be given (free of any charge!) to the families. And I found one already! Just had to share :)

Thanks again for your well-wishes,
Suzann
 

vmd

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Suzanne:

So glad to hear the good news, as are the members of your family, no doubt.
 
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