Needing some guidance

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Smith2026

Active member
Joined
Jan 18, 2017
Messages
35
Reason
Loved one DX
Diagnosis
11/2016
Country
CA
State
Saskatchewan
City
Estevan
Recently my dad was told by neurologist that he was 95 percent sure it was als but had to rule out the other causes since there is no als test. Well had blood work and Mri all came back good. He had a two hour testing of other tests where they tested muscles and reflexes. This was back in November 2016, we are still awaiting our visit back to neurologist.

Now here is the story, back in 2012 we had notice his right foot not working properly and he was tripping a lot. He was told drop foot. Skip forward to 2013 I had noticed that his calf looked so small and had a pale white colour but my dad was content with his doctor telling him it was drop foot.

In 2014 I noticed his right right was getting weak but just assumed of age and because he never exercises just has an office job and plays on a computer. He continued to stumble a lot and eventually se got him a cane. The next strange thing I had noticed was he couldn't lift his arm up over his head and couldn't grab a mil container unless he used both hands.

I finally attended one of his doctors appointments where I asked if it could have been a stroke. Ct scan was done and all was clear and with that I asked for some physio therapy so we could try and build up at right side. He got really fatigued from it, so back to the doctor where I told him how tired he was and how weak he felt, and I had noticed his voice sounding strange not to mention that this cough had also shown up, with this white phelgm.

He now uses a walker, out of breath from walking, having trouble getting out of chairs, constantly scratching or rubbing his nose, dry skin every where. I forgot to mention he lost 25 pounds. I also have noticed the left arm atrophying as well.

I am thinking the diagnosis is more than likely correct but is that cough, voice change, rubbing and scratching his face and oh I forgot blowing his nose constantly while and after eating mean his diaphragm and facial muscle are affected now? So many questions with no answers. Please help, thanks so much.

I will say that when I was the caregiver for my mom (lung cancer) the cancer clinic was just a phone call away, and we don't have any resources or support here.
 
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Sorry to hear about your dad, and to welcome you here. We always recommend getting a second opinion at another center with a life-changing diagnosis such as this is.

All the voluntary movements can be involved in ALS so having more mucus, difficulty breathing/speaking/eating are all common and suggest that pulmonary function should be measured with an eye toward obtaining a BiPAP, CoughAssist and/or suction machine if he needs them. The diaphragm and facial muscles are some of the muscles that are generally affected. Is this neurologist based at a university clinic?

The weight loss suggests that a feeding tube should be discussed, presuming eating/drinking are increasingly difficult. Where is he being seen? Some of the Canadians here can perhaps suggest resources for you.

Best,
Laurie
 
I am sorry to welcome you.

I agree that his voice issues and cough are likely part of this. Not sure about the nose- perhaps he is not able to blow strongly enough to clear it?

Weight loss is always a worry. He may be eating less due to swallowing difficulties and fatigue. Weight loss also happens when respiratory issues are involved. It is so much work to breathe especially at night that PALS burn many calories.

Has he had pulmonary tests? When is his follow up with the neuro? I understand appointments can be hard to get - here too- but November to February is very long. Can you call and tell them his symptoms are worse and you are worried about breathing?
 
Smith2026, as you posted,

"Recently my dad was told by neurologist that he was 95 percent sure it was als but had to rule out the other causes since there is no als test."

Yes, there are tests that will confirm the presence of ALS. Do you recall all of the tests your Dad has had so far? Such as EMG/NCS and so on.
 
There might be a slight problem in swallowing as I noticed that he holds liquids for a while in his mouth before he swallows. I don't want to ask in case I give him a panick attack. My dad is the type of person who tells you his symptoms like six months after he gets them
 
So far they have done a test of his reflexes, looked for muscle twitching, put a needle into his muscles and also one where they hooked up some kind of pad to monitor nerves( well I think that is what they were monitoring).
 
So far well at least I think his swallowing may be slightly affected, his appetite is the same so the weight lose has to be muscle atrophy. I am hoping we will be getting a swallow test and a breathing test here soon.
 
So sorry to welcome you here Smith2026. This forum is a wonderful resource for information and support.
 
Thanks for the welcome and yes this has been an awesome site. Just wishing that I would have never had to use it, hope that makes sense. Even before my dads neurologist appointment I had Googled ever symptom and Doctor Google kept leading me to als and to this site. I never would have thought this would be the diagnosis.
 
I completely understand. I remember when my PALS told me he was looking into ALS. I didn't believe that was what it was. Unfortunately he was right. It was a complete shock the day our neurologist told us the dx.
 
May I ask if he or she is still with us and how did it start?
 
Smith, if someone's profile says they are a current caregiver ("I am a family member"), the PALS is alive. To see Sooner's husband's story, click on her name and look for previous posts. To see several stories, look in the Newly Diagnosed forum where you are now.
 
Sorry to have to welcome you here but you are amongst friends. We all understand the shock. I still go tbere from time to time.


I remember the day like it was yesterday. Our family doctor sent Steve to the Neurologist after not being able to figure out what was going on . Steve had a series of tests including blood tests, MRI, EKG. We had to wait almosy a month for all the tests to come back. I remember putting his symptoms on Web MD. ALS was one of the top diseases for Steve's symptoms. Of course I researched ALS along with a ton of other possible diseases. I didn't ever want to hear the ALS diagnosis.

I knew something was seriously wrong with Steve but was thinking Parkinsons. When we both went to the first Neuro appointment and they handed me the test paperwork. I looked down and it had ALS/MND on it. It was an instant shock, tears ran down my face and I was going to pass out. Steve knew nothing about the disease but one look ay me and he knew it was serious. I felt like someone kicked me in the gut, for days.
 
Smith2026 - My PALS had slurred speech as a first symptom in July '14. He was diagnosed in Oct '15. He can no longer speak, takes 100% nutrition via feeding tube. He is still walking barely... and his hands are starting to have some real progression.
 
Hello Smith2026, so sorry to meet you here, and I hope you have come to the wrong place, but if you have not then this is the place for help. first I think you should contact ALS Canada and ask for assistance, find out your closest clinic. In Ontario we have what is called CCAC. ( Community Care Access Center ) that works with ALS. as a go between you and ALS Canada. ALS offers many services, that would be the place to start.
 
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