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ladave

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Feb 12, 2006
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Tomorrow I go to see the neurologist and get the final diagnosis. It will be four weeks to the day since my preliminary diagnosis of "highly probable ALS" based on emg, nerve conduction study and clinical observation. They've been doing blood work and mri to rule out other possibilities.

I suppose there is a small chance it will turn out to be Lyme Disease but I doubt it. Everything I've read indicates I have a classic case of limb onset ALS. My final diagnosis will come more than three years after my symptoms began and will follow my third emg, third mri, several misdiagnoses and unnecessary surgery on my cervical spine.

I don't know whether to me mad or happy about the misdiagnoses. On the one hand I got to live a couple of years without the dread spectre of ALS hanging over me- and it isn't like cancer where they might be able to "cure" it if they "caught it in time". OTOH had I learned earlier I might have been able to slow it down with diet and lifestyle changes, and I might have lived the last two years very differently. Ah well, it is water under the bridge.

I want to say how good it is to have found this support forum, where I can share with people who understand my situation. I hope it will make me better able to handle the news I expect to get tomorrow. Thanks for being there.

Dave
 

Granny

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Joined
May 18, 2005
Messages
205
Hi Dave,
I will be thinking about you tomorrow, pray that things go well. Never give up hope.
Glad you found this forum.
Keep us posted.
Leah
 

dana

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Joined
Mar 17, 2005
Messages
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I too will say a little prayer for you. I hope that tomorrow brings some answers to questions that you have.
Good luck and God bless,
Dana
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Dave. I'm not much of a prayer guy but know that my best thoughts are with you as you go through this difficult time. As far as thinking what might have been, don't worry about it. I had a brother in law that got liver cancer and they said if you quit drinking and smoking you might live an extra few years. He quit everything and his wife made it uncomfortable for his friends to come around because she didn't want them drinking or smoking around him. Soon his friends stopped coming to visit. He may have got 2 years more but he was miserable the whole time. Live your life the way you want. Take the doctors advice but don't let it get in the way of living. Let us know how you make out. There are many of us here who care.
Al.
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
Hello Dave,
I do hope the news is better than you had hoped for. However, either way i pray it will comfort you somewhat, knowing that we are all here to listen whenever you feel the need to talk. I think we all have good days and bad days when it comes to handling this disease. I am sorry you were put thru 3 EMG's , i had 2 and that was enough for me. Not a fun test. I for one will not be playing it at any of my future parties , lol. Well hang in there my friend and take it a day at a time.

Marlo
 

TBear

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
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City
Uxpatch
I too will be thinking... and praying for you today Dave... if you listen to Al... you'll be jumping out of airplanes, lounging in tropical paradises and having grandchildren just for fun! They news may not be good, but it doesn't have to foil your fun quotient! If the news is good... celebrate for the rest of us!

CHeers

T.
 

braveheart

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Joined
Dec 14, 2005
Messages
32
Well Dave, I hope you are in a peaceful state of mind today, did you get your diagnosis?
 

Heather

New member
Joined
Feb 23, 2006
Messages
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Hi, everyone. Have been reading your posts since my daughter showed me how to access "alsforums." My son says that I'm a lurker and I said that I was just reading posts and afraid of jumping in. But that was last week.I was diagnosed in Dec.05. I was a community nurse but I was falling up and down peoples' stairs So I'm now retired and can no longer drive due to ALS and the insurance company. So this was a little dip in the pool to see how this all works.Bye to you all. Keep posting Heather
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
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State
NL
City
Newfoundland
Heather said:
Hi, everyone. Have been reading your posts since my daughter showed me how to access "alsforums." My son says that I'm a lurker and I said that I was just reading posts and afraid of jumping in. But that was last week.I was diagnosed in Dec.05. I was a community nurse but I was falling up and down peoples' stairs So I'm now retired and can no longer drive due to ALS and the insurance company. So this was a little dip in the pool to see how this all works.Bye to you all. Keep posting Heather
Hi Heather, welcome aboard. You might want to add your location to your profile so people can be more helpful when addressing your concerns. You can do that by clicking on the "User CP" button at the top of this page then "Edit profile" where you can add information. Often things vary from province to province or country to country. I am assuming you are in Canada. I don't know how upset you are by losing your driving privileges but if you want them back and have reasonable upper body strength that should not be a problem. I was diagnosed in 2000 and now can only walk with a walker but my driving is fine. It takes surprisingly little strength to drive and there is a tendency for some uninformed doctors and insurance companies to yank your license at the sound of the word "ALS". Lots of paraplegics drive just fine with adapted vehicles. I have gone from a regular car to a lowered floor mini van with hand controls. These are inexpensive to add to any car and both you and the able-bodied can drive either using the hand controls or conventionally. I have no problem driving safely. In my province, I have to receive an annual clearance letter from my doctor.
 
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ladave

Distinguished member
Joined
Feb 12, 2006
Messages
136
braveheart said:
Well Dave, I hope you are in a peaceful state of mind today, did you get your diagnosis?
Yes I did, as posted in another thread- it is ALS. State of mind-variable:)
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
Hello John1,
Just wanted to thank you for talking about the driving thing. I wondered how that would work for us. I havent lost my driving rights YET ,, but i did choose to not drive ,, on my own if i am not having a pretty good day. But at least , now i know that my license can't be taken away from me ,, if i am physically able to drive. People do tend to get nervous when they hear you have ALS. They also tend to treat you different , as though you have suddenly become ,, retarted. Thanks again Marlo






John1 said:
Hi Heather, welcome aboard. You might want to add your location to your profile so people can be more helpful when addressing your concerns. You can do that by clicking on the "User CP" button then "Edit profile" where you can add information. Often things vary from province to province or country to country. I am assuming you are in Canada. I don't know how upset you are by losing your driving privileges but if you want them back and have reasonable upper body strength that should not be a problem. I was diagnosed in 2000 and now can only walk with a walker but my driving is fine. It takes surprisingly little strength to drive and there is a tendency for some uninformed doctors and insurance companies to yank your license at the sound of the word "ALS". Lots of paraplegics drive just fine with adapted vehicles. I have gone from a regular car to a lowered floor mini van with hand controls. These are inexpensive to add to any car and both you and the able-bodied can drive either using the hand controls or conventionally. I have no problem driving safely. In my province, I have to receive an annual clearance letter from my doctor.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Welcome Heather. Glad you found out how much fun we have here and decided not to lurk anymore. Al.
 
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