Old 09-07-2018, 09:35 PM #1 (permalink)
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Default Update to First Post

So much has changed since I first sent that message on 7/22/18. Then I had right leg weakness and left arm weakness. Thank you all for the support to seek a neuromuscular physician. I went through MRIs, EMG, nerve conduction and was finally diagnosed on 8/30/18 with ALS. This in part because my symptoms are rapidly worsening. My right arm is now weaker than my left arm and can't lift either. My left leg is markedly weaker and most drastic is my speech is slurred, difficulty breathing and swallowing. Today was my first day at the ALS Clinic and it was so overwhelming. I see how fast I'm progressing and it scares me.
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Old 09-07-2018, 10:04 PM #2 (permalink)
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Default Re: Update to First Post

I'm so very sorry about your diagnosis, Mike. Although you definitely had concerning symptoms in July, I had hoped for a different outcome for you. Please post any questions, fears or anything you'd like here The members here are supportive, informed, and kind.

Hugs to you.

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Old 09-07-2018, 10:33 PM #3 (permalink)
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Default Re: Update to First Post

Mike, so sorry to hear of your diagnosis. I am glad you were able to receive quick medical attention.

I have moved this thread to the Newly Diagnosed section of the forum.
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Old 09-07-2018, 11:02 PM #4 (permalink)
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Default Re: Update to First Post

I am so sorry. I feared this from your posts. Hoping you will slow down progression. I trust they offered riluzole and nuedexta. Many get transient improvement in bulbar symptoms with the latter.

Are you planning a feeding tube and bipap? Early as possible is desirable if so.

Welcome but I wish I didn’t have to say that
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Old 09-08-2018, 12:03 AM #5 (permalink)
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Really sorry to be welcoming you, I did hope for a different outcome.
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Old 09-08-2018, 06:44 AM #6 (permalink)
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Mike - Welcome. I just wish it wasn’t here.

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Old 09-08-2018, 07:42 AM #7 (permalink)
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Mike, sorry your here but your in the right place.

Post often ask questions learn all ya can.

Comfort lies in being one small step ahead of the night mare
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Old 09-08-2018, 08:34 AM #8 (permalink)
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Well, bummer just doesn't quite do it. Welcome to the club no one should join. If you have to be here, there is a wealth of support and knowledge you won't find anywhere else. You are among friends.
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Old 09-08-2018, 09:40 AM #9 (permalink)
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Default Re: Update to First Post

Hi Mike and sorry to have to welcome you officially. The first couple months or so after diagnosis can be an emotional whirlwind, and then things do settle a bit.

Hopefully you’ll have a plateau and an opportunity to do some fun things. We’re here to answer questions and support you as best we can.
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Old 09-08-2018, 09:47 AM #10 (permalink)
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Mike,

I'm so sorry. Please let us know how we can help.
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Old 09-09-2018, 04:37 AM #11 (permalink)
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Default Re: Update to First Post

Very sorry to hear your news, Mike. Let us know how we can help. Though you suspected earlier, hearing the news is a shock and clinic days are traumatic in themselves, so give yourself time to grieve and then work through a legal, financial and advance end-of-life plan so you can be prepared to focus on your own situation and not have to backtrack as much for the paperwork.

Best,
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Old 09-09-2018, 08:01 AM #12 (permalink)
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I was told I was too advanced and rapidly progressing for meds. My breathing is a struggle. I feel out of breath most of the time. Tuesday I get a cough assist and external vent. I have to have a CT of my stomach because I had a lap-band in 2011, then they are going to put in a peg-tube. My anxiety is high and am taking valium, which helps a little. I cry very little because of the anti-depressants. I find myself sitting in front of my computer most of the time. Sometimes it helps with the anxiety, sometimes it makes it worse. Going to clinic was hard because I saw those who are more advanced than I am and all I could think about is that will be me soon.
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Old 09-09-2018, 08:32 AM #13 (permalink)
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Default Re: Update to First Post

I am heartbroken to hear this. I hope you have lots of support from friends and family.

Please know you can come here any time you need to talk. We even have a section for rants and raves. But if you can post here or in general about what is going on. Or if you want specifically to talk to other PALS post in the PALS section and say so. We are here for you

I can imagine the clinic was a shock Unless you spent time with your cousin you probably haven’t had up close and personal experience of ALS as your field is oncology

Again I am so very sorry
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Old 09-26-2018, 07:59 AM #14 (permalink)
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I'm so sorry. Sorry isn't even sufficient. Please know you are not alone in this. We are all thinking of you and hoping for you.
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Old 09-26-2018, 07:19 PM #15 (permalink)
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Default Re: Update to First Post

So sorry to welcome you here. Ask any question quickly and you'll hopefully find quick solutions as each new crisis arises. I read about how fast your other family members progressed and that is indeed quick. Staying ahead will be a sprint.

Although no riluzole sounds hard on the first read it's pretty solid advice. If it prolongs life duration, say, 10%, it's important for slow-progressors but wont' make a noticable impact in super quick progressors. You might have even had side effects that would compromise your quality of life.

I don't want to bumm you out even more but you said yourself you are a rationale person. You don't have long, think about how you want to spend your time, what's important to you, whom you want to talk to, what you want people to remember you by. With rapid progression you might not be able to find a solution for every problem quick enough. My PALS lived for 13 month after getting diagnosed. Once the insurance would come through and pay for just part of some transfer grips he lacked the strength to use grips at all. Lots of energy spent there. So choose your battles wisely. Things that will grind slow-progression PALS down over the years won't be a problem for you. It's cynic but true.

I found that (low-tech) communication is one of the most important things. Making your wishes known in every situation shouldn't be a problem. We used a very simple technique shown in a YouTube video. Search for "Jason Becker Communication - Vocal Eyes" if your interested in a good and quick system. After some time me and my boyfriend new the letter board by heart and he could move his eyes until the end and even tell me exactly what music he wanted to hear in his last hours.
Take your friends and family along for your journey. Tell them how you feel, listen to their everyday grievances. Nobody should be alone with this s##t and you'll always have support here.
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