Old 10-06-2017, 02:32 PM #1 (permalink)
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Default My dad was diagnosed with MND two days ago. What to expect?

Hello,

My dad's first symptoms were in December 2016, he started slurring some consonants. Since then we were trying to find out what was happening to him, but the local neurologist was not able to finalize diagnosis. Unfortunately, he also told us that he has a 90% confidence my dad does not have ALS, MG or MS. In June my dad was not able to talk at all, and started having weakness in his right hand and leg. His doctor referred him to North Western University Hospital. WE went there two days ago.

There, the two amazing doctors, after looking through all of my dad's tests and records said that we should prepare for the worst. That it is most likely some kind of MND, most likely ALS, with bulbar onset. I was devastated. We still all are. The doctors said that usually they see the patients need some kind of assisted ventilation needed in 3-5 years. They also said we need to repeat an EMG and come back in 3 months. They want to see my dad every three months from now on.

What does it all mean? I am trying to figure out what to expect from now on. For how long will my dad be able to walk and be more or less active? What is the worst case scenario and what is the best?

Thank you!
Anna
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Old 10-06-2017, 03:09 PM #2 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Hi, Anna,

Very sorry to hear about your dad. There is no way to predict how long your dad will walk, though with bulbar onset, it is more likely that he will need support for nutrition (feeding tube) and breathing (BiPAP machine) before a wheelchair. The visits every three months and staying in touch with the clinic coordinator in between as you need to, can help you coordinate equipment needs with his clinic at Northwestern to stay ahead of the game, since equipment has a lead time for insurance approval and some of it has to be customized.

You may want to browse some of the "stickies" here for some ideas as to what to expect, and there are many materials on line elsewhere. You can also search using the link up top for "bulbar" to read the stories of some other bulbar CALS (caregivers).

As far as best vs. worst scenario, it's probably more pertinent that all MNDs are progressive and that because bulbar symptoms affect eating, drinking, swallowing, speech and breathing, and make managing saliva and mucus more difficult, they are probably the more limiting set of symptoms in quality of life. In the stickies you will see advice about documenting your dad's wishes as to how he wants to trade off quality and length of life.

We will support you however we can.

Best,
Laurie
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Old 10-06-2017, 03:27 PM #3 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Thank you so much for your quick reply, Laurie. We are trying to prepare for what's coming. We have a big family and a good support for him. Thank you for the recommendation on the stickies and threads. I'll read them next.
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Old 10-06-2017, 07:32 PM #4 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

So sorry to hear about your dad's dx. My husband also has bulbar onset. His started with slurred speech as well. You have found a great place for information and support.
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Old 10-07-2017, 09:12 AM #5 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Hello Anna,I also haveBulbar onset, I can talk but only my wife can understand me, I walk with the aid of a walker and I have a wheelchair that I use more for sitting than transportation. I have left leg problems hence the walker. I luckily have no pain, I guess meds supplied by my doctor my have something to do with that but pain has never been an issue for me. I have a feeding tube but only use it for Meds. twice a day l can eat full meals in a regular manner.

I used to go to the Neurologist every three months and that was to see how I was doing and what assistance I needed, such as wheelchairs, .walkers and possibly meds. I now go every six months, and that is the progression over approximately four years.

My wife and I have found the best way for us to live with this disease is to accept it and live life as best you can. ALS becomes the norm because that is what it is, there is no sense in taking the woe is me attitude and feeling sorry for yourself it will not help. I just accept it for what it is and live my life as I see fit, and that is waking up every morning and looking forward to the day. Anna I really hope this helps you and your dad.

Al
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Old 10-07-2017, 12:34 PM #6 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Thank you for your reply, Al. I'm glad you and your wife found a way to accept the disease. That's what we are all determined to do as well. I know that from now on every day of my dad's life is going to be his best day. It is so sad, but I want us all to do something fun and meaningful. While he can still drive i hope he and my mom can go on a road trip somewhere, but we will see. Everything is an effort for him now as he gets so tired.

My mom and dad live with my family and I am so grateful we made this choice of living together several years ago. I think being close to kids and grandkids is a blessing with this disease.

With the distraction of a big family we are all doing fine during the day and keep the positive outlook. It's at night when I can't fall asleep and keep thinking about my dad. I am not ready to lose him.
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Old 10-07-2017, 12:40 PM #7 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Hello Anna,

I am so sorry to hear about your dad. You stated in your subject line that he was actually diagnosed two days ago, but unless I missed something, I could not verify that in any of your posts.

It sounds to me like your dad may have also had a series of small strokes, sometimes referred to as TIA's, please ask his neurologist if that is a possibility, though not much better news, it would be better than ALS.


Good luck and God bless,

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Old 10-07-2017, 11:28 PM #8 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Hi Tom,

Yes, he was diagnosed on 10/04.

All of the doctors my dad saw were confident it wasn't a stroke since his MRI is completely clean. I was hoping it would be something like mini strokes... But why would I not trust the doctors in North Western? That is one of the top hospitals in the US right? Also, they specialise in ALS.

My dad will have a repeat MRI this Wednesday and a repeat EMG on November 9. I'll keep you guys updated about the results.

Is there still a chance he was misdiagnosed? I really really hope so?

Also, my dad was prescribed Nuedexta. I doubt it they'd prescribe it if they weren't highly confident...

Thank you for your suggestion, Tom!
Anna

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Old 10-07-2017, 11:39 PM #9 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Hmmm, I'm too tired to think straight now. After Wednesday and the initial shock I had difficulty sleeping. But after your post and now thinking... what if there is still a chance? Why did the doctors not prescribe rilutek? And ordered more tests? Could it be that there is still a small chance its not ALS? And if its not, what could it be?

My dad's symptoms are: can't use his right hand, speech is almost gone, saliva control is bad. Swallowing is bad. Meals take 30 minutes. He's limping on right foot. He laughs too easily at anything and its hard for him to breath during laughter. During the physical evaluation the Drs said some of the muscles were gone in right hand and on the right side of his tongue. Reflexes in right arm and leg were overactive... his right hand also feels very cold.

I really really hope there is still some hope. From your experiences guys, what do you think?

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Old 10-08-2017, 12:13 AM #10 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Anna,
Yes, Northwestern is a fine facility, one of the best nationally. I was presuming from your post that they had said, "our diagnosis is ALS."

Thus, I'm afraid Tom's post may serve as false hope. The damage from even small strokes can generally be seen in advanced imaging looking for such damage, given your dad's symptoms. The EMG in such a situation would not match up with ALS. The symptoms and timing you report are different from what we would expect to see in that case, as well.

That said, if the neuro who said it wasn't likely ALS is the one under whose auspices the last tests were done, I can understand why Northwestern would want their own film and EMG, and perhaps there is some room for doubt given suboptimal testing to date, but generally the NU tests would have happened before your dad's appointment and the dx. Were they backed up?

A second opinion is never a waste -- I had not suggested it since Northwestern is in essence your dad's second opinion -- but if you have doubts once the November 9 results are in, you are certainly within your rights to forward the new films and EMG tracings to a second clinic and seek a third opinion. But I think it's fair to say that even though things haven't proceeded in "typical order," the likelihood is that ALS will be the final diagnosis.

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Old 10-08-2017, 06:46 AM #11 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

As Laurie says Northwestern is a respected ALS center. Am I correct that the sequence here is saw a community neurologist who did the EMG and the MRI then went to Northwestern who looked at the reports, examined him and said this looks like MND, probably ALS but we want to do another EMG here to make the call as to whether it is ALS versus another MND? And the EMG was scheduled next available?

At a guess his clinical exam was consistent with MND and the differential is PLS which is an UMN disease seen on exam and ALS which is UMN and LMN and is seen on exam and EMG. They want their own EMG done by an examiner they trust to make the call. Riluzole is usually not prescribed for PLS which explains why the nuedexta was given but not riluzole.

If your dad agrees getting the medical records might shed light on this if you need it to clear up your doubts.

I am so sorry. Please let us know how things go
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Old 10-08-2017, 08:36 AM #12 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Nikki, it was exactly as you said. In fact, the repeat MRI is not from Northwestern. They only want to do EMG. The repeat MRI is from or local family doctor who responded to my begging before we saw NW. She saw my dad's decline and saw we were unhappy with or local Neuro. So she agreed to do something...

And yes, in NWU they said it's MND and most likely ALS. But that's all. I will read up more on what other MNDs are there. Since I'm new to this, i am not very educated on the topic yet.

Thank you Nikki and Laurie. This community seems amazing. I'm sad my dad can't join. He is actually Russian speaking and its harder to be on English speaking forum. Especially since its harder to type now. Even the apps for text to voice are all geared to English. There are stone for Russian, but none for bilingual that we found. The speech therapist in NWU said she'd get back to us with recommendations, since Chicago has such a large Russian community, but she hasn't done so since Wednesday yet.
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Old 10-08-2017, 08:39 AM #13 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

And yes, the EMG was scheduled next available. And we will see the MWU dr in one month again right after emg, and after that every 3 months, which we already scheduled too.
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Old 10-08-2017, 08:45 AM #14 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Hi Nikki, I just read about PLS, and now I pray its that and not ALS.... But he does have some limb wasting though, so i think the hope is small. I will keep you all posted as we learn more

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Old 10-08-2017, 09:23 AM #15 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

We all hope for PLS for him too of course. It sounds like NW is handling this perfectly ( as one would expect). The three month follow up initially confused me but I now understand that commences after a visit to discuss the EMG and probably give a diagnosis

You would think there could be text to speech with a universal translator too wouldn't you? I hope you find something workable soon.

This is hard and you are in deep shock, coupled with the uncertainty which makes it harder. There is life after diagnosis- you will read stories here of people who do amazing things after diagnosis- so please don't think you and your family will never have good times with your dad. You can make tons of memories and experience joy, I promise. How old is your dad?

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