Old 03-13-2018, 02:41 PM #1 (permalink)
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Default diagnosed - atypical onset

So wasn't sure wether to post back here on this forum but decided I would in the end. I was diagnosed with ALS about 2 months ago after two years of hell battling doctors, being sent through psychiatric system, multiple EMGs etc. I have pretty much known for the last 16 months that I had ALS after I noticed the weakness, twitching and atrophy (in that order) which spread to pretty much all parts of my body over time combined with the fact that the doctors were unable to find an alternative cause (they didn't diagnose me back then as they ignored the atrophy and the EMG weren't Definitive enough until recently)..

Anyway I am very tired at the moment - the fatigue is overwhelming, my breathing problems started about 18 months ago and is pretty poor now but still breathing without assistance. Swallowing also affected but no PEG yet. can still walk very short distances but can feel the difference day to day regarding my strength and energy. I have atrophy throughout the body (legs, feet, buttocks, split hand, hands, fingers, upper body, neck, upper arms, face).

I probably had an atypical onset (abdominal/thorax) but I am here on the forum just to say that I am feeling first hand what an impact this disease has on the body and if there are any questions or anything I can help with I will try to do so. I have managed to build up quite a lot of knowledge on ALS and I am also 99.9% sure of what caused it for me.

I am only in my thirties so this is all pretty devastating. I want to thank those on this forum that have provided a lot of support for those with ALS.
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Old 03-13-2018, 05:00 PM #2 (permalink)
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Default Re: diagnosed - atypical onset

Very sorry to hear about your diagnosis, Grieg. I would encourage you to ask about BiPAP starting at night, as that could help not only with breathing but fatigue.

Best,
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Old 03-13-2018, 08:13 PM #3 (permalink)
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Default Re: diagnosed - atypical onset

Grieg,

I'm so sorry to hear. Your onset is very atypical. Mine was too.

The one thing that didn't happen for the year before my diagnosis was that the doctors didn't listen to what I knew about my body. I also had bad relative weakness but they weren't used to seeing a woman weighing under 120 so strong. It wasn't until my local neuro did an EMG that everyone started paying attention. Even after the first EMG looked like ALS, they didn't diagnose me for another 9 months because I still "appeared" strong, even though there was atrophy in both my left leg and left arm.

I hope you stay with us and keep posting.
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Old 03-13-2018, 09:00 PM #4 (permalink)
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Default Re: diagnosed - atypical onset

Grieg very sorry to hear of your diagnosis but glad you found us.

My friend’s husband got ALS two years before my husband was also diagnosed. Her husband also had very atypical presentation. They actually spent a few weeks making sure he had not had a stroke, and then a year in more tests and referrals.

I hope you stay with us too. We do have some young people here with ALS like yourself, and some great tips and insights from the old folks too
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Old 03-13-2018, 11:16 PM #5 (permalink)
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Default Re: diagnosed - atypical onset

Griegg, I'm really sorry to see you ended up with this disease. I hope the Norwegian medical system and its social security system can treat you well. Do you have a caregiver, perhaps a wife?
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Old 03-14-2018, 12:33 AM #6 (permalink)
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Default Re: diagnosed - atypical onset

Hi Grieg. Sorry to have to welcome you here, but its a great place for support and information. I just noticed you are from Norway and using the name Grieg. Is it your name or an homage to the famous Norwegian composer? Either way, I love his music.

I hope you find ways to live well in spite of ALS. If you have questions, were here to help.
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Old 03-14-2018, 12:58 AM #7 (permalink)
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Default Re: diagnosed - atypical onset

Welcome to the club no one wants to join. I get the fatigue thing. You have to pace yourself. Someone described it as you get a finite number of spoons per day. Everything you do costs one or several spoons. when your spoons are gone, they're gone. You are done for the day. This is where equipment becomes important. I can still walk with a cane, though not far. My hands are just beginning to show weakness. I use a power chair for most longer walks, with my dog, around the mall. That sort of thing. That way I am not using all my energy to get places. I use energy when I get where I'm going. It is all about using equipment to allow myself to get from my house to the train, go to Toronto and participate on the board of directors for ALS Canada. Without the power chair all that is impossible. Besides if you are walking with someone I just slow them down. Without a chair my world shrinks to as far as I can walk, a couple of hundred yards. Keep the world as big as you can for as long as you can.
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Old 03-14-2018, 10:41 AM #8 (permalink)
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Default Re: diagnosed - atypical onset

Hi all and thanks for your encouragement and support. Thanks for all the suggestions.

I had to go abroad (Mayo Clinic and another Clinic in Europe) to get diagnosis as the healthcare system in my country hasn't been very good to me....they are currently processing my documents from abroad and until they see me here again (scheduled in 4 weeks) it will be difficult to get a BiPAP. But yes my breathing is bad, especially at night, wake up with headaches at times and perhaps a BiPAP will give me some energy.

The diagnosis is definitely challenging to get around here. There is no specialist ALS centre in my country so relying on neurologists. They seem to be very reluctant to diagnose unless clear evidence on EMG. 'If you can still walk and talk it aint ALS'

Yes - Grieg is a tribute to the great composer I guess I want to try and stay a bit anonymous on this forum as Norway is small and tbh I haven't told many people I have ALS.

No caregiver as in wife or girlfriend unfortunately. But I moved back in with my parents and they are extremely supportive in helping me preserve energy (and as someone said this helps me pace myself). They do all the cooking, washing and help me with logistics.

I wanted to ask a question - it's slightly easier for me in the evenings. As in, when I wake up it feels like it takes hours for my body to get going.....all the symptoms are worse than the day before. Then things gradually gets a tiny bit easier later in evening. Anyone else experience this?

I won't go into my symptoms but I think ever single part of my body has been affected at this stage.

Thanks again for your messages of support.
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