Old 11-24-2017, 04:23 PM #1 (permalink)
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Default Living with ALS

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.

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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Old 11-24-2017, 05:45 PM #2 (permalink)
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Default Re: Living with ALS

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
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Old 11-24-2017, 06:42 PM #3 (permalink)
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Default Re: Living with ALS

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.
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Old 11-24-2017, 07:15 PM #4 (permalink)
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Default Re: Living with ALS

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.
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Old 11-24-2017, 07:28 PM #5 (permalink)
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Hi Marianne
Welcome aboard.

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Old 11-24-2017, 08:32 PM #6 (permalink)
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Welcome. Your progression is very slow and I hope it continues to slow.
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Old 11-24-2017, 09:38 PM #7 (permalink)
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Default Re: Living with ALS

Sorry to have to welcome you here... It's a great place for info and support.
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Old 11-25-2017, 12:36 AM #8 (permalink)
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Default Re: Living with ALS

Welcome, Marianne. No question, comment or rant is too big or small.

Best,
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Old 11-25-2017, 08:26 AM #9 (permalink)
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Thank you
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Old 11-25-2017, 09:28 AM #10 (permalink)
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Default Re: Living with ALS

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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Old 11-25-2017, 06:03 PM #11 (permalink)
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Default Re: Living with ALS

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.
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Old 11-26-2017, 08:42 AM #12 (permalink)
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Welcome to the forum ! Post often ask questions!
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Old 12-07-2017, 12:51 PM #13 (permalink)
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Default Re: Living with ALS

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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