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Feb 18, 2006
Hi everyone. I am 40 and I have not been diagnosedn yet .Ive been coming here for about three months and have read alot about everyone.You are all great,and I am really happy that I found you!..................My story kinda goes like this...........
Around oct of 2004 I started to feel some slight weakness in my left finger and big deal really just thought it was me making too much of nothing.Well as Dec.approached I started to get the odd cramp in my left hand.I thought that maybe my carpel-tunnel was acting up (had it in 1994),so I didnt make much of that.In march of 2005 I noticed I was having a bit of a struggle putting up my Sons BBall net,when I tried to put the screws in with my left hand.Really felt slow and difficult.Still brushing things off.In april 2005 I took a golf trip with my family and friends in the U.S for a week.When I got back it was when things started to happen.I was getting electric wave feelings in my upper arms and my legs.After a few weeks severe pains in my legs.So i go to my g.p.and we do a full phsycl .He calls me back to do blood work again ,because he found my musle enzyme levels too high...his nurse asks me if I take lipitor , i have a drinking attack.......NO! The 2nd round of blood work came out O.K. DR says everything is fantastic with my blood prob we will send you for an E.M.G. at North York General for your left hand .That came back perfect...At this point my D.R thinks its all in my head!So as the days go on I feel weaker and we now are into may of 2005 and the twiching started really mild in my left bicept........I ran to my Dr....and he tells me its nothing it will go away.......Well 2 weeks and it is getting stronger and mentally I think im going to die on the spot.Not knowing is mentally stressful. Anyway I get referred to a really good neuro here in T.O.and after 3hrs of talking and testing(getting poked in the hand and arm for the second time in not a pleasnt expce.)EMG signs of weakness..but he sees my fasics in both my shoulders and left arm...I think he got spooked..He couldnt look at me anymore.
He says to me "I can not diagnosed you at this time"but you can either set another appt with me for jan of 2006 (which is 6mos f from now) or I can refer you to a proff esor of [email protected] said send me ther. Well we all know the routine there bloodwork ...mri....ct scan.........and yes another EMG.I must say the staff there are fantastic and the neuro is really a wonderul person...I love this guy.
Anyway it was all overwhelming for me as I had no idea this was an ALS NEUROMUSCLE clinic.....I had no idea...till after the app.what I might have!
Only the EMG at sunnybrooke showed weakness in my left hand(I guess it took that long) all blood work good.
Fastfwrd to today and about 7months later still no diag.....I am now going ther every 3 months...only my left hand and arm are weak legs are feeling weak , fasics are all over now ,back ,legs, arms, still going to work (I work retail so the hrs are long...and always on my feet)..yelling at the kids.(girl 17...boy 14)walking 1-2 miles every night (xcept when cold then treading)trying to keep things as normal... The advice I got here was LIVE for TODAY...........and thats what Iam doing.....I have been through a lot the last 6 months as every one here knows.(by there own exprnces)..but I have alreary accepted what is to come.I have made my mind up to fight this every step of the way....... my prayers are with you all..........thank you for being here. joe
Sorry that you are here JoeJoe. The clinic at Sunnybrook is quite somthing... and the staff are great. Good for you to keep things as normal as possible... I hope that you are given a diagnosis that it is a pleasant surprise.
My heart goes out to you, I understand how you feel. My husband was similar to what you experienced and he felt the way you did. We had to wait for months till the other day for the final diagnosis. We have basically been told to live life to what you want to do. I felt like yelling at all of them and saying no, don't tell us this stuff, it is wrong. We know now it is not wrong and we are still in shock. We like you are going to fight hard and keep hope alive. I wish I knew the right words to say to you, I am only learning this living nightmare also. I can say this though, always look forward and keep a positive attitude even on the days you feel you cannot. Know that we are all here for each other, when you need a friend we are all here. We may not have the answers but we have kindness and support to help each other throught the good and the bad days.

Sorry about your luck Joe. I don't know which is worse. knowing or not knowing. That's what most of us have had to do. Wait untill you get worse so THEN they can say yes it is ALS for sure. Really sucks but you seem to have the drill right. Live for today. Look at every new day as a blessing. Take care. Al.
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