New to this!

[hannah31297]

Hi all! I was diagnosed in October of 2017 and have found great support in some of the pages on Facebook and thought I would give this forum a try. Being 21 makes this even more frustrating because most people my age don't even know what this is, so it's refreshing to have a place where everyone knows what I'm talking about!

I've been on Riluzole since November and Radicava since the first day of March, and so far no major complaints with the 2. It's nice to have a community, even though I wish none of us had to be on this forum in the first place.

Cheers!

Hannah

 

[wishmobbing]

Welcome Hannah, wish it wasn't so that you will find this bunch most helpful and amusing!

If you like, tell us a little about your progression and about yourself. With 21 you definitely lower the age average more than I do with 37.

 

[Jlynn]

Hi Hannah..sorry to have to welcome,you here but welcome none the less. This is a great forum with awesome people and tons of support. At 21 girl you should be out living life to the fullest and not dealing with this sh***y disease. I'm sorry for that.

 

[chally]

Welcome Hannah, post often get to know some new friends.

Chally

 

[KimT]

Hi Hannah,

I think you'll find lots of helpful people on this forum. I curious, do you come from a FALS family? I'd really like to hear your path to diagnosis because 21 is so young. It would help others if you are willing to share.

 

[KarenNWendyn]

Hi Hannah,

Sorry to have to welcome you. This is a good group of folks and a good place for support and information. You’ll become an expert in no time by hanging out here and reading through some of the threads.

We’d love to hear more about your symptoms presentation, any family history, etc. if you’d like to share.

 

[Kristina1]

Hi Hannah, so sorry this happened to you at age 21-- I thought my onset was young (age 31 at diagnosis)! I have read some material suggesting early onset can be associated with slow progression so I truly hope that is the case for you (and myself). This is a great forum for support. I joined several FB pages but I find myself preferring the crowd here on this forum. Welcome and hugs to you.

 

[flowerpower]

hi hannah,

I'm new as well : )
this is my first time visiting an ALS forum - I have never really talked to anyone about it. I'm looking forward to making new friends here!

 

[lgelb]

Flower, we would love to learn more about you as well, if you'd like to start your own thread? Warm welcomes to you and Hannah.

Best,
Laurie

 

[hannah31297]

Welcome Hannah, wish it wasn't so that you will find this bunch most helpful and amusing!

If you like, tell us a little about your progression and about yourself. With 21 you definitely lower the age average more than I do with 37.

In January 2017, I noticed I had a foot drop on my left side and mentioned it to my PCP in April. She referred me to a neurologist, and I met with him in July. After my neurological exam and with my unilateral weakness, he was very suspicious for ALS. He scheduled me for a brain MRI that same night to rule out a tumor in the right hemisphere, which came back clear. His next suggestion was to run an EMG/NCS. My EMG came back abnormal, as 5 muscles on my left side showed no response. His suspicions for ALS grew, and he referred me to the Neuromuscular Clinic at MedStar Georgetown University Hospital. My neurologist agreed with him but before confirming the diagnosis, he tested me for everything autoimmune and spinal under the sun to rule out other causes. After all of that, he came to the same conclusion, and referred me to the Johns Hopkins ALS Clinic. I do clinic at Georgetown but I'm on Riluzole and Radicava and do PT/OT weekly! We are hoping that at least slows things down. Thanks everyone for the warm welcome!!

 

[hannah31297]

I have an AFO for left foot drop but other than that I am pretty independent.

 

[wishmobbing]

Thank you for giving us a little background on you. I'm glad to hear that your progression isn't on the quick side and hope together with Kristina that you have many many good years. My boyfriend started with footdrop, too, at the beginning of last year and by now he's mostly paralysed except his head.
You tackled the whole Radicava thing and I'm sure with being young and informed you'll do great.
Someone will surely tell you to avoid falls by all means as they can hasten progression. So, take care!
Again, welcome to the forum! Come here for any questions or rants. People here will get you.