twospeed99 update

[twospeed99]

I spent 3 hours at ALS Clinic at GF Strong today and the neurologists there says they have no clinical reason to believe I have ALS.My EMG of all my limbs ( hands, forearms, shoulders, triceps, legs, and back) were normal except one thumb muscle had a abnormality but when she tested another muscle controlled by the same nerve it was normal suggesting damge to the muscle not the nerve.This SOB neurolgist where I live that diagnosed me with ALS after a 25 minute exam and a EMG of one thumb muscle should be shot.I don't know whether I want to punch him for two months of hell or hug him for giving me a greater appreciation for life.She thinks the laceration to my wrist in my youth probably did some damage to the muscle and that is what she saw,but she said I absolutley do not have ALS.I might have something causing some of my symptoms but it isn't a MND.After reading my brothers file before even testing me she said he did not have ALS either and what he has is not even herditary.She called it Juvenile Brachial Amyotrophic Diplegia and it effects you in your youth lasts for four years or so than stabilizes, which is why he's lived 23 yrs with it.I was just going to disappear from this forum but it was the support I got from some of you that helped me keep it together these last few months.Some of you had doubts about the diagnosis and that gave me hope and in the end you were right, so I'd like to say thank you and I wish you all the best everyone of you.

 

[Al]

Fabulous news Twospeed. Your story reinforces our opinion to get a second or even third opinion if you are unsure. It's nice to hear of someone getting some good news on here. Come back and visit anytime. Take care of yourself.

 

[Granny]

Wonderful news, Twospeed! We all rejoice with you. Do take care of yourself, enjoy every day to the fullest and be thankful for your blessings.
Come back and visit.

 

[twospeed99]

Thanks for the kind words all.I've learned so much about this disease in the last two months that I'll never forget it or you.A correction on what my brother has it is called Juvenile Brachial Amyotrophic Diplegia, there is a strain in Japan they call Hirayama's disease but it is not fatal, as soon as the neurolgist read his file she said it was a classic case and what he had was not herditary (I knew then things were looking up).Everyone on this site has taught me a lot about human spirit and how you reach out to help people like myself while your suffering with problems of your own is incredible.If there was a common denominater in what type of person gets ALS it would be a compasionate, caring, unbelievably strong person.I will check in on you, it would of been way harder to of went through this without being able to bounce my thoughts off you, again thanks, I learned alot about myself and my fellow person.You'll have a advocate forever in myself when it comes to this disease.

 

[trisha p]

Twospeed, this is great news - thank you so much for keeping us updated. With all the difficult news we face when dealing with ALS in our own lives, either as persons afflicted with ALS or caregivers, family and friends, it's wonderful to hear about answered prayers and favourable test results. As Al said, sometimes those second and third opinions are priceless. Enjoy everyday of your life and know that you're welcome here anytime! Blessings!

 

[Theresa2004]

Fabulous news..just fabulous. Many of us here questioned your intial diagnosis, that goodness for more then one opinion!

As a side note, this was a reality check, thank god it has a positive outcome.........look into your insurance options if it is possible...

 

[twospeed99]

I take alot of lessons away from this you can be sure.If there was ever a person who needed to reprioritize his life it was me.I was (notice was) a workaholic who put it ahead of family and friends and life,credit ratings and money were my main importance and I fell into a rut.Things happen for a reason and if I don't apply what I have learned I'm stupid.It was so nice to phone my brother this morning and tell him he does not have ALS, after all these years why no one ever referred him to a ALS clinic is beyond me.He is so relieved to know that what he has will remain stable and not one day start to reprogress.I really feel a bond with this site even though I don't have it, you were my crutch and allowed me to lean on you all for support and it did wonders on days where it was to much,it is a great service,Thank you all.

 

[TBear]

Great news Twospeed! Its always refreshing to hear back from someone who's had a happy outcome with their diagnosis. Even better that he thought enough to get back to us. Often people will just drop off line... who knows maybe there are more stories like this one that we just haven't heard from?

CHeers

T.

 

[twospeed99]

Thanks TBear, the thought of just dropping away did enter my mind, not from not caring but I kind of felt guilty in away about my good fortune when others are less fortunate.I thought about what kind of people I have found here and I knew you'd be happy for me and my family and with the support you give I wanted to share this.I think it was a post by GrampAl where he wondered where some people go and if they did or did not have ALS after posting their intial worries, I thought you all deserved to hear my outcome good or bad.

 

[rcharlton]

Twospeed

I'm very happy for you and your brother - that's great news.

Good thing you followed up with additional opinions.

Run out and buy a lotto ticket - and maybe some LTD insurance now that you can once again qualify

Happy trails!

Richard

 

[Mike27]

Fantastic!

Good luck to you in the future!

Cheers!

 

[Carol Deboer]

Hey Twospeed,

What wonderful news for you and your family. See, prayers are answered. As everyone else said, second and third opinions are necessary. I appreciate what you said about looking into your soul and finding things out about yourself that now you can pass on to others. Good for you. I am so happy to hear some good news, it makes some of our dark days a little brighter. Continue to STAY STRONG and live life to its fullest.

Love, Carol

 

[twospeed99]

Al, Granny, Trisha, Theresa, TBear, rcharlton, Mike, Carol and everyone else, you are some real good people, by far the best people Ill never get to meet and I wish you all the best forever.I'm going to print this page and keep it forever, man how could you ever yell at your kids, bitch at your wife or kick the dog ever again with this hanging on the wall.I made a lot of promises to somebody on my flight down to the clinic, maybe I was 25,000 feet closer than everyone else and he heard me.You are the most sincere and caring group of people I have ever been involved with and I know I'll always remember, think and wonder about you for the rest of my life.This was a major event in my other wise boring life, I'm glad there were people like yourselves to talk to.Take care.Every year they have a ALS walk here, I'll be in it next year for all you guys and gals.
Bob

 

[TBear]

Thanks Bob... good luck to you and your brother. Speaking of walks... I'm thinking that I might head "home" on the 1st of October for the Niagara Walk. Is anybody here in that area going?

CHeers

T.

 

[Al]

What day is it. I could look it up but it's Sat. night and I have company and they probably need the advert anyway. Might just go down.