Old 01-04-2019, 07:47 PM #1 (permalink)
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Default Diagnosed 12/20/2018

I first started having symptoms 3 years ago. It started with a little left leg weakness and fatigue. My PCP said I was just getting old and that being tired was a symptom of every disease.

Over the course of 3 years my left leg got weaker and weaker, and the fatigue continued. My PCP eventually referred me to a cardiologist because of fatigue at my insistence. Result: mild aortic stenosis and mild regurgitation at the mitral valve. Not enough to explain the fatigue.

This past year I suffered two really bad falls because of my weak left leg. My PCP ordered a lumbar MRI and physical therapy. My orthopedic surgeon, did not agree. He ordered a cervical MRI and referred me to a neurosurgeon. The neurosurgeon examined me said he needed me to get an EMG, so he referred me to a neurologist for an examination and EMG. But, the neurologist he referred me to just happened to be affiliated with our local branch of the MDA. He ordered a thoracic MRI and then did an EMG. He was able to finally diagnose my disease as ALS.

There was a certain sense of relief in finally knowing what is wrong with me. Looking back, the diagnosis fits perfectly with my history of symptoms. I've had the disease for three years and can still walk with the aid of a walker. I just got a GoGo scooter and it really helps me feel less tired and more mobile.

Of course, now I wonder what's next? Will it progress quickly? Slowly? Who knows?

Should I opt for treatment? If so which one? My neurologist is a bright guy but he doesn't put much stock in any of them.
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Old 01-04-2019, 08:25 PM #2 (permalink)
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Default Re: Diagnosed 12/20/2018

A sad welcome, James.

Generally speaking, three slow years, I would expect progression to continue slower than the median. So you might be looking at being one of the 5+ year crowd.

Just to note we do recommend a second neurological opinion for a life-changing diagnosis like ALS, even when the first one is a specialist like yours.

To address your question about treatment, riluzole data shows more efficacy in the young and slow progressors. I don't know your age, though.

The edaravone studies have not demonstrated efficacy in people past 2y after diagnosis, but if the logistics of dosing would allow you to try it, and you are a "throw the kitchen sink at it" type, your payor would probably approve it. Because of your heart conditions, mild though they might be, I would consult with your cardiologist as well.

Best,
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Old 01-05-2019, 05:21 AM #3 (permalink)
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Default Re: Diagnosed 12/20/2018

Welcome ,though sorry you have found us

I agree with what Laurie says. Riluzole is supposed to extend survival 10 percent. If true then those of us who progress slowly benefit most. It also works mostly at the beginning and end so if you are going to try it don’t wait! I have taken it right along and tolerate it well.


Edaravone is more burdensome because it is an iv but if the logistics work you might want to try it.

Ii is true these are not miracles but slowing down progression especially when you are still functioning and independent is a worthy goal

Happy you have your scooter! Preserving energy and preventing falls are two really important things. Injuries are hard to recover from and probably progress us faster. Saving energy, not exhausting yourself and finding easier ways to do the important things will enhance your quality of life

Looking forward to getting to know you
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Old 01-05-2019, 09:33 AM #4 (permalink)
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Default Re: Diagnosed 12/20/2018

Hello James, sorry to meet you here but, not our choice. I to have a scooter and I have found that it gave me much more mobility, as far as advise I only take it from my neurologist and he only prescribes meds for pain or flexibility no experimenting. Iam on a vitamin program recommended by ALS Canada, and that’s it. I feel good, sleep well, and still eat well although I have had a feed tube for three years but only use it for meds. Hope you as fortunate as me and able to live a fairly good life. My problems are I walk with the aide of walker, can not talk and that is about it. Good luck on your journey James.
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Old 01-05-2019, 10:27 PM #5 (permalink)
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Default Re: Diagnosed 12/20/2018

Welcome to the worst club out there. But if you have to be here, it is a good place. You are amongst friends. We slow progressors tend to stay that way, unless you have a fall and injure yourself. That can start things moving quicker. The first rule of ALS is don't fall. This will require the use of equipment, canes, walker, wheelchair and the like. The gateway drug of equipment seems to be the lift chair. Rule 2 is keeping ahead of your needs. Some equipment can take 6 months to get ordered and funding in place. Rule 3 is LIVE! Just because this disease has a horrible course, everything is not happening tomorrow. So focus on today and what you can still do. And DO IT!
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Old 01-06-2019, 10:28 AM #6 (permalink)
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Default Re: Diagnosed 12/20/2018

Welcome to this cruddy club, James. You will find the forum members to be knowledgeable and kind so please ask many questions.
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Old 01-06-2019, 11:50 AM #7 (permalink)
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Default Re: Diagnosed 12/20/2018

Hi James
Glad you found the forum. The advice, experience and emotional support here is what we all need.
All the advice given previously is precious. Especially about planning ahead materially ( gear you may later find useful) legally ( discussing the situation with your loved ones) and emotionally ( Carpe Diem !)
Here people will do their best to answer any questions or understand any idea or impression.
Good vibes
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Old 01-06-2019, 12:35 PM #8 (permalink)
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Default Re: Diagnosed 12/20/2018

Welcome James. Iím glad the scooter is working out for you. Best not to fall.

Since you went three years with symptoms before being diagnosed, I agree with Laurie that this most likely suggests slow progression. Hopefully it will continue that way.

Youíll find lots of good advice on this site and supportive people.
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Old 01-06-2019, 02:03 PM #9 (permalink)
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Default Re: Diagnosed 12/20/2018

Thanks Laurie,

I certainly hope I'm in the 5+ year club. But, when you say that, do you mean 5+ years since the onset of first symptoms or 5+ years since the date of diagnosis?

I plan to start riluzole immediately. My neurologist was doubtful of its value but after I read the posts here, I decided to give it a try. I don't plan to try edaravone.

My age is 69.5. I was in very good physical condition prior to the onset of this disease. I don't have other serious medical issues.I

In regards to a second opinion, my neurologist is the top person for this disease in my state. I would have to travel out of state to do better. I watched his testing, heard the explanation of results and diagnosis. I feel he is correct. If getting a second opinion were easy I might do it but since it would require travel, I'll just go with my neurologists diagnosis.

Thanks
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Old 01-06-2019, 02:19 PM #10 (permalink)
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Default Re: Diagnosed 12/20/2018

Sorry to have to welcome you here James.

It is encouraging to read of your slow progression so far. Hopefully, that pattern will continue.

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Old 01-06-2019, 03:34 PM #11 (permalink)
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Default Re: Diagnosed 12/20/2018

Based on the simplest models (one of which I have linked to), if you start riluzole now, the median survival for someone with the delay in diagnosis you had and at your age is estimated at ~18 months post-diagnosis. Note that's a median, so there would be half a chance that you would go past that, and these data always look in the rear view mirror and combine lots of PALS in different situations.

Other fancier methods of predicting prognosis would have you in Stage 0 or 1, with at least 50% of time with the disease left to go. These still suffer from rear view mirror syndrome, of course.

There may well be interventions discovered within the next few years that give you an extra edge -- probably not magic "cures" but ways to slow progression.

In your case, the diagnostic delay and symptoms limited to one region/leg is in your favor, statistically speaking, but your age less so.

Many studies have examined various factors that might predict survival, e.g. use of BiPAP, riluzole use, body mass index (don't get thin; maintain your weight), feeding tube, gender, progression in how many regions, etc.

In summary, hope/try for the best, plan for the worst. That includes preventing falls, nutrition/hydration, enough good sleep, and transitioning to respiratory support when you need it.
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Old 01-06-2019, 03:58 PM #12 (permalink)
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Default Re: Diagnosed 12/20/2018

Thanks Al,

I am enjoying the scooter a lot. I only use it in the house but it really saves me a lot of effort.

How did you wind up with a feeding tube just for meds? I must assume at some point you must have needed it for eating. What changed?

James

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Old 01-06-2019, 04:37 PM #13 (permalink)
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Default Re: Diagnosed 12/20/2018

Hi Vincent, thanks for commenting.

Rule 1. I have had several bad falls this year, two of which sent me to the ER. Both were due to my weak left leg. I didn't know I had ALS then. Now, I don't walk, period, even if I have a walker.

This does raise a question: What about surgeries? I had surgery on my shoulder last April. Was that a mistake? Is the anesthesia a problem?

Rule 2: I am looking ahead, making plans for reduced mobility. The local ALS association is helping me. They already provided me with a scooter.

Rule 3: Good advice! I plan to start soon.

James

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Old 01-06-2019, 04:47 PM #14 (permalink)
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Default Re: Diagnosed 12/20/2018

Iíve given up trying to determine if Iím in the 3 year club, the 5 year club, or the 5+ years. None of us really knows. We could be taken out in an automobile accident tomorrow. Just live your life as best you can, setting goals for this year and a few for beyond. You can revise this as you go.

But get financial affairs in order ASAP and youíll feel better about that. Also a good idea to talk to family about end of life wishes and fill out an advanced directive. I think this is something everyone should do when theyíre at least 50 even if they donít have a terminal diagnosis.

Yes, we generally recommend second opinions. The first neurologist I saw was/ is a neuromuscular disease specialist who diagnosed me with a motor neuron disease, most likely ALS, and several months later with definite ALS. He explained everything to me, and I trusted his explanation.

I still went for a 2nd opinion, 5 1/2 hours away, at a university medical center. They were useless. The doctor gave me a very superficial exam, wouldnít tell me anything (and Iím a physician) except to come back in 6 months (which I did not). So not all second opinions are worthwhile.
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Old 01-06-2019, 06:57 PM #15 (permalink)
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Default Re: Diagnosed 12/20/2018

Sorry to have to welcome you James, but, I'm very glad you found your way here and know you'll find a lot of help. So much good information and advice already. I've learned by reading everyone's messages to you tonight because our situations are somewhat similar. So thanks for being here and asking such good questions already. If you have a local ALS support group I'd recommend attending.
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