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scottishmum

New member
Joined
Mar 18, 2012
Messages
9
Reason
PALS
Diagnosis
03/2012
Country
UK
State
scotland
City
glasgow
hi all ,

i have been lurking on here for the past few months as i thought the dreaded diagnosis was coming. my symptoms started almost 4 years ago with right foot drop which progressed upwards in my leg , with left foot symptoms starting a year ago . i now have left foot drop and am continuing to walk around the house using 2 elbow crutches but my balance is awful cant go anywhere without a wheelchair. My EMG's show lower neuron damage and denervation in my legs but arms are still showing no damage. My first neuro didnt seem to have a clue and transferred me onto another who obviously knows his stuff.

he has said it is MND and he thinks it is likely to be ALS as my left elbow is showing brisk reflexes i am to go for another conduction type test - cant remember the name was so stressed at that point - and if this show upper neuron involvement then it'll be confirmed and he will start me on rilutek.

i have never been so scared in my life , i have 3 children 2 of whom are disabled and i dont have time to be ill. keep telling myself he is wrong but i know i have to deal with it , just wish i could stop crying . all my thoughts and prayers to everyone who has this disease in their lives
 

beckysuenc

Active member
Joined
Mar 15, 2011
Messages
86
Reason
PALS
Diagnosis
02/2011
Country
US
State
Florida
City
Steinhatchee
So very sorry to hear this news. You are at the right place for help and support. A lot of wonderful and knowledgeable people here. Keep coming back.

Beckysuenc
 

scottishmum

New member
Joined
Mar 18, 2012
Messages
9
Reason
PALS
Diagnosis
03/2012
Country
UK
State
scotland
City
glasgow
thanks , i am so glad to have found this place , its not something you can easily talk about but here it everyone is so supportive
 

cervus

Senior member
Joined
Mar 18, 2011
Messages
923
Reason
Lost a loved one
Diagnosis
11/2010
Country
CA
State
AB
City
Leduc County
Hi! This forum is a great place to learn about ALS and how to cope with different stages of progression but most of all for the support from so many others that have lived or are living through this disease. One day at a time. Yasmin
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Hello Scottishmum,
I've found a wealth of information here on the forums both in the current chats and the archives. The support has been fantastic and really has helped me cope. I hope that you'll find the same.
Good luck to you!
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
City
Colorado
Hello Scottishmum. I'm so sorry you find yourself here. Do you have a good moral support team? I sure hope so. Hugs are SOS comforting. Try to keep your spirits up Dear. Do you have a church?
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
City
country
Hi Scottishmum, so sorry you are hurting so much, and for the diagnosed. You have come to the right place. Welcome to our family where you can get the support you need and loving ,caring people who do understand and have so much knowledge. We will try and help you get thru this together. You can rant and rave, share and not be judged. Hand in hand we are here for you. {{{HUGS}}}
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
I am so sorry for your condition. Make good plans while you have strength. Unfortunately this is a progressive disease, that shows no mercy. Prepare for the worst and hope for the best. More than anything have plans for the care of your children. I hope you have a slow progression and will have function for enough time to plan for you and yours.
God Bless
 

ltbeauti

Distinguished member
Joined
Feb 22, 2011
Messages
215
Reason
PALS
Diagnosis
04/2008
Country
US
State
VA
City
Chester
So sorry that you had to get the diagnosed. Terrible disease. The right place to come. There is a wealth of info here.
I try to hang with the winners (people who I think will positively influenence me)
 

hjlindley

Senior member
Joined
Dec 1, 2011
Messages
760
Reason
PALS
Diagnosis
10/2011
Country
US
State
VA
City
Richmond
WE all face this differently, but I refuse to let this disease own me. I own it, and ALS had just better get used to it! And being of Scots heritage, we all know we are more resilient :)
 

magicgirl

New member
Joined
Mar 12, 2012
Messages
6
Reason
Friend was DX
Country
US
State
AL
City
Decatur
hi all ,

i have been lurking on here for the past few months as i thought the dreaded diagnosis was coming. my symptoms started almost 4 years ago with right foot drop which progressed upwards in my leg , with left foot symptoms starting a year ago . i now have left foot drop and am continuing to walk around the house using 2 elbow crutches but my balance is awful cant go anywhere without a wheelchair. My EMG's show lower neuron damage and denervation in my legs but arms are still showing no damage. My first neuro didnt seem to have a clue and transferred me onto another who obviously knows his stuff.

he has said it is MND and he thinks it is likely to be ALS as my left elbow is showing brisk reflexes i am to go for another conduction type test - cant remember the name was so stressed at that point - and if this show upper neuron involvement then it'll be confirmed and he will start me on rilutek.

i have never been so scared in my life , i have 3 children 2 of whom are disabled and i dont have time to be ill. keep telling myself he is wrong but i know i have to deal with it , just wish i could stop crying . all my thoughts and prayers to everyone who has this disease in their lives
Just read your post and my heart goes out to you. I have a friend, recently diagnosed, in the beginning stages of tests for this great horror.

I'm just starting out on this journey with her - and she is living 1,000s of miles from me. I pray for learning ways of coping with this to help her and pray you have a good support network in your life.

This is all so UNFAIR. My best wishes to you in learning to deal with this.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Hello

If you can, get a rolling walker verses the arm crutches. They might make moving a tad easier. I'm assuming you have braces for the footdrop (AFO) already.

Hopefully, they will find no issues in your arms. There are several diseases that fall under the MND umbrella--so until you've had a 2nd opinion, don't give up hope.

Check into clinical trials if they offer them there--should the diagnosis be confirmed. I'm so sorry you're going through this.
 

scottishmum

New member
Joined
Mar 18, 2012
Messages
9
Reason
PALS
Diagnosis
03/2012
Country
UK
State
scotland
City
glasgow
Thank you for all your wonderful words of support and encouragement , Just knowing your not alone is so comforting , I am usually a very strong willed person and think I'm still in shock/denial about what I was told.

One thing I keep telling myself is I will not let it win , I will fight it every step of the way.

Ms. Pie , I don't have a church that I attend or a lot of support around me ( I'm an only child) but I do have a strong faith which helps.

Notme , I have two splints but the rolling walker was no good for me safer with crutches even if they do make my arms tired. They have given me a wheelchair as well.

Hjlindley, yeah we scots are a stubborn bunch , never like anything or anyone to get the better of us , lol
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
Scottishmum,

It certainly sounds like you have some form of MND. You should take solace in the fact that you appear to have a variant with very slow progression. Four years since leg onset and still walking suggests you will have a very long duration. Lots of promising research trials are ongoing right now that may help you in a couple of years.
 

scottishmum

New member
Joined
Mar 18, 2012
Messages
9
Reason
PALS
Diagnosis
03/2012
Country
UK
State
scotland
City
glasgow
Hi john1 ,

I am very grateful that I am still mobile after this time. ,especially after reading On here how quickly it can change for some . I am hoping that it continues this slowly for my family's sake.
 
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