MRI and now call with doctor

[Cherise77]

So my Dad was called for another MRI of his brain 7 months after ALS diagnosis.
That was 2 weeks ago. The neurologist said she wouldn’t call if nothing shows up.
Today her office called and asked if my Dad was available for a phone call from the neurologist tomorrow at noon.

Does anyone have an opinion on what the call would be regarding? We don’t want to get our hopes up that it showed something other than ALS but that’s obviously what we’re praying for.

Thank you for any advice or opinions on this matter.

 

[Nikki J]

Not knowing your dad’s clinical picture it is hard to know if they could have found a mimic.

They could have found something incidentally - not the cause but something else he has. My sister had a benign cyst.

Sometimes on high powered mris they see things that support an ALS diagnosis- not enough to make the diagnosis without other findings but they might say it goes along with the rest of the picture.

Some people with ALS have brain atrophy. This is often the case with co existing FTD but not always. I have had it noted on mri for four years. My cognitive testing remains fine

I hope it is good news but as you can see it could be good or bad or neutral

 

[Cherise77]

Thank you so much for your response.

I did wonder about FTD. Do you think this is something the neurologist would tell a patient over the phone or wait until there next appt in person?
They got the results today and set up a phone call for tomorrow. Would FTD be something they would need to tell you that urgently?

Feels like we’re going through the diagnosis process. So anxious!

 

[affected]

No FTD is a terminal disease in its own right, of course combined with ALS it is a very serious issue. For me, the FTD impact on my husband was far worse than the ALS impact. No doctor would give a diagnosis of it by phone, directly to the person with failing cognition - I would hope not at least.

Will you be there with dad for the call? I think second guessing and future worrying the call is not really going to help. He hasn't been called in to the office urgently so that's something. In the meantime we can only speculate instead of spending each moment in the now. Try to find something to calm your anxiety with that will also help dad.

 

[Nikki J]

They would not diagnose ftd from an mri. It is a clinical diagnosis. Unless this has previously been tested and discussed the only thing that might be said if they saw atrophy would be that they want to set up some testing.

I know it is hard to wait but truly it could be many things. It may not be super urgent but something the doctor feels they need to say thrmselves in a conversation and they have an available time tomorrow. Let us know what happens

 

[Cherise77]

Thank you for all your advice. I know we shouldn’t drive ourselves crazy thinking of all the possibilities.

They’ve never discussed FTD with him before. He has not had any signs of it.

My Mom will be with him when he takes the call and my Sister and I will be waiting by the phone to hear from them. Praying hard this is not more bad news.

 

[affected]

Please let us know, but honestly a phone conversation is going to be to discuss something, not pronounce something if you know what I mean.

If he has no signs of FTD in his behaviour, don't let that worry you

 

[ThroughThatValley]

Not knowing your dad’s clinical picture it is hard to know if they could have found a mimic.


Sometimes on high powered mris they see things that support an ALS diagnosis- not enough to make the diagnosis without other findings but they might say it goes along with the rest of the picture.

What my neuro told me differs a bit. He said new MRI machines can cast light on brain activity to such an extent that you might actually have hypersignals shown that could look pathological when they are just physiological. Sometimes too much power is just too much to sort out the good from the bad.

 

[Nikki J]

That is why I said not enough to make a diagnosis. If you see something you need to look at other things to make a diagnosis. My mri read clinical correlation is necessary.

Essentially those findings are a signal to look hard into the diagnosis.

 

[affected]

Cherise what did the doctor actually say in the phone call?

 

[Cherise77]

Hi everyone. Sorry for taking so long to update you. I've been home with a sick newborn and toddler the past week.

Luckily the call with my Dad's neurologist had nothing to do with the MRI. The MRI was fine and showed nothing that isn't normal for someone aged 60.
Thank you for all your advise and support,
She had never called my Dad before and it was right after the MRI was done so we assumed that was what the call was regarding.

It actually had to do with my Dad having the FUS gene and a researcher at UBC wants my Dads permission to study his FUS gene variant.
We hope that the study will lead to something hopeful for all PALS with the FUS gene mutation.
I'll keep you posted.

 

[lgelb]

Hope the kids are better soon, Cherise! And glad to hear your dad is helping in the research effort.