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marianne50

New member
Joined
Sep 26, 2017
Messages
0
Reason
DX MND
Diagnosis
06/2017
Country
CA
State
Ontario
City
Oakville
I'm still not sure if I want to be a member of this club...I've been hanging around this site reading the threads and trying to find a reason I shouldn't be here. I'm for sure in denial but I may need advice, friendship so ... just in case I wake up from denial, I thought I'd join. :shock:

I am 51 years old I have one son and a 10 year old cat. I was a Chemical Laboratory Technician for 20 years and I was diagnosed with a MND February 2017.

My neurologist is calling it lower motor neuron variant ALS. My last day at work was this past July 2017. It was recommended to leave work to reduce stress and help slow down the progression.

I was very active and healthy until about Jan 2014. I walked an hour a day 6 km everyday. I did 20 min weight workouts 4 times a week, I ate healthy and tried to maintain a positive outlook on life even though I did have some extreme emotional stresses due to family issues.

My first symptom 3 years ago was hand/grip weakness in my right hand and a loss of my manual dexterity buttons, shoe laces, nail cutters, handling beakers and bottles at work and cups at home. After a few physiotherapy sessions my therapist noticed the atrophy in the palm of my right hand below my thumb and index finger. I ignored her advice to have that checked out for about a year until the weakness was progressing up my arm and then to my left arm/hand with muscle twitching and cramping. I went to see my family doctor...I was then sent to see a Physiatrist.

After his EMG/Nerve conduction tests I was referred to a Neurologist at an ALS clinic. I had, I think it was 15 vials of blood taken to rule out mimics. After the blood tests, MRI, EMG/Nerve conduction tests and a round of IVIG to rule out MMN ( I had no response to the IVIG)...it turns out I am very healthy except I have a MND. They tell me at the ALS clinic that I am progressing very slowly and that's a good thing.
 
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ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,260
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi Marianne-

Welcome, though sorry you find yourself here. It's an excellent group.

I am glad you find your progression slow and that you are already under the care of an ALS clinic. I think you will find some of the members here likely attend the same clinic as you. There is a small Canadian contingent on this forum- so you will get excellent advice specific to Canadians, should you need it.

Once again, warmest welcome.

~Fiona
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,663
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Really sorry to welcome you - hey no one wants to belong here, so you fit right in on that point! I hope your progression remains incredibly slow.
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,368
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Before my husband was diagnosed, I pretty much hoped against hope for another explanation and hoped someone here would say “no way is it ALS”. No such luck.

Sorry to welcome you here but glad you have found us.
 

Angiegal

Distinguished member
Joined
Feb 15, 2017
Messages
301
Reason
PALS
Diagnosis
09/2015
Country
CA
State
Ontario
City
Kitchener
Hi Marianne
Welcome aboard.

Angie
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,922
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Welcome. Your progression is very slow and I hope it continues to slow.
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,565
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
City
Cleveland
Sorry to have to welcome you here... It's a great place for info and support.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,757
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Welcome, Marianne. No question, comment or rant is too big or small.

Best,
Laurie
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
576
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
Hello Marianne50
I'am very sorry to meet you here but I thought since we are neighbors I would see hello. I too am very slow progression, no progression in the last year, I'am very happy about that. If there is any thing you would like to talk about I'am here (although I can not speak,I can text or I have an I pad that can talk for me) would look forward to hearing from you. I will be away for the next week or so but after that I will be back in Oakville
Al
 
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KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Sorry to welcome you here, but welcome. I totally understand the denial bit. It’s really a pretty normal response to dealing with chronic illness. I’m glad you are otherwise healthy and with slow progression. May you continue to have slow progression. Enjoy the forum.
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
Welcome to the forum ! Post often ask questions!
Chally
 

marianne50

New member
Joined
Sep 26, 2017
Messages
0
Reason
DX MND
Diagnosis
06/2017
Country
CA
State
Ontario
City
Oakville
Hi Al,

Thank you for replying...yes, I would like to keep in touch since we are neighbours. I'm close to the lake Kerr and Lakeshore area.
 
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