Newly diagnosed... staying optomistic

[Shankopotomas]

Hi everyone - my name is Mike and I was diagnosed with ALS about two months ago. I've been reading some posts on the forum and I've really been inspired by everyone, so I thought I would share my story.

I'm 31 years old, and started getting symptoms about a year ago when I noticed weakness in my left hand when trying to turn a key. That carried over into writing (I'm a lefty), and I noticed my hands cramping and "locking up" from time to time. I then began to get cramps regularly in my arms, back, and shoulders, and started noticing the twitching in approximately December of 2010. My GP ran a bunch of blood tests and was unable to find anything, and that was followed by a clean MRI of my brain. Next stop was the neuro, where I had a cervical spine MRI (clean) and the EMG that indicated probable MND (I had also had muscle wasting in my left hand at this point). I got a second EMG and opinion from Beth Israel in NYC, and the ALS diagnosis was confirmed.

I'm still very active, and the disease really hasn't affected my life that much (I still run, lift weights, and play (bad) golf, but I do fatigue faster). I've got a lot to live for, as my wife and I are expecting our first baby in late December (it's a girl!). I've seen Dr. Mitsumoto at Columbia Presbyterian Hospital in NYC, and I'm happy to say that I've gotten through the screening for Dexpramipexole and will be starting the trial this coming Thursday (fingers crossed for no placebo!). I'm hoping that Dex can slow an already slow moving progrssion, and I have a long and active life ahead with my soon arriving little girl.

Thank you for reading!

 

[llwlpn]

Hi Mike, Welcome and I'm sorry that you need to be here. I think keeping a good, positive attitude is key. That's what I've been doing. Hopefully you will have a very slow progression.

 

[brooksea]

Hey, Mike! Sorry about your diagnosis, but, congrats on your wife's pregnancy! I hope you will continue to have a slow progression and that you will be able to have many enjoyable years ahead. (My husband is a lefty, too.)

 

[susanf]

Welcome Mike, I messaged you but wanted to say hi again. You have a lot to stay positive for I had almost the same symptoms but I also had slurred speech. I'm in the Dexi trial in Tampa.
Take care,
Susan

 

[Zaphoon]

Welcome, Mike! Here's hoping for a continued snails pace progression and no placebo in the trial!

 

[Will]

Welcome Mike, My PALS and I are also hoping for a long slow progression (he is only 50), and are also in the Dex trial. There are several other trials that offer some hope, and I can see the day soon when a cocktail of these meds will turn a often fatal condition into a chronic condition. Then will come a cure, probably from the stem cell research!...I hope.

In the meantime, stay positive, enjoy ur family, do what u want to do, and stay active. Lots of PALS take some supplements and have made some health dietary changes to try to fight back in little ways.

 

[ScarlettK]

Hi Mike,
Glad you joined in here and great attitude also! Congrats on being a NEW DAD soon! Little girls are the apples of daddy's eye! Prayers for the slow progression and dex trials. Look forward to hearing more good news from you! Hugs from Kaye in Tennessee.

 

[Shankopotomas]

Thanks everyone - there are definitely some rough days, but I'm happy to say today that my legs are sore from a tough workout last night, rather than anything to do with ALS. I go in tomorrow to get my meds for the dex trial... fingers crossed

 

[pmbenb83]

Definitely keep up the positive attitude. Congratulations on expecting your first baby! That is so exciting! My husband has had a very slow progression also. His symptoms started back in 2000-2001 with hand cramping like you described. I hope yours is just as slow and hopefully slower. Be careful over working your muscles. Eric was a big gym rat and he was told that he should exercise but not to over do it, because muscles fatigue could cause muscle wasting. There's definitely a fine line between continuing to be active and not doing too much.

Best wishes to you and your expanding family.

 

[EGBAR]

HI Mike I was diagnosed in June too. If I can be of help email me.

 

[helpingpals]

Very sorry for your diagnosis. You have a wonderful attitude and it will serve you well.

 

[joni51]

Hey Mike, welcome to the forum, great positive attitude, and I know you have to be thrilled with a little girl on the way! Congratulation! I too hope your is very slow progressing!

 

[Sequoia]

Welcome to the forum family Mike. You have alot to live for....will pray your progression is very slow...but take the tip about not pushing yourself...I used to work out in a gym until my ALS clinic told me...you can do that but you may bring on weakening of muscles sooner. So I just did stretches and a little yoga, and it was good advice.

 

[Bhappy]

Welcome Mike! I'm happy to see your positive attitude and glad to hear about the baby girl soon arriving in your life. It's also great to hear you'll be getting in the dex trial. I'm going for the screening next week and I'm also hoping for the real drug. By the way, I had hands affected first and I'm a lefty too. I was super active, but my left leg started acting strange about 5 months ago and that's slowing me down a lot. I still get around as fast as I can with my wheeled walker! My family is helping me stay positive as I'm sure yours is too!
Take care and hang in there!

 

[Georgia Peach]

Hi Mike. Welcome to a family you never knew you'd have. Hope your progression continues to be slow and that you get the real deal in the Dex trial. We are going into Clinic on Wed for an evaluation so we're keeping our finger and toes crossed.