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perplexed

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Hi Everyone,

Terrible day as you all know from experience. My husband was diagnosed today with early onset bulbar ALS, slow progression. The neuro wants to do another EMG (his have been clean so far) in 6 months, encourages a 2nd opinion, wants him to start Rilutek and a clinical trial of Talepenal, and simply said that the longer it takes for anything to happen in the limbs, the better.

The main trigger symptoms for her were weight loss and swallowing difficulty.

While she has slotted the Dx as "possible ALS" on the El Escorial chart (which according to those criteria means it's also possible you have something else), she is "absolutely convinced, without a shadow of a doubt" that this is the correct diagnosis.

The MRI is apparently enough to rule out any mimics of ALS, and the reason she sounds so sure is that they just can't find anything else it could be.

Horrible, horrible to hear that "you definitely will lose your voice" (my husband is an attorney) and "it's positive that you have an early diagnosis as you can attack weight loss immediately" and "your quality of life won't immediately plummet."

Well, there it is. We're both in shock. We have a nine-year-old daughter who has been very anxious recently, possibly picking up more on my stress than on the reality of her father's symptoms.

Take care, you all,
Erica/Perplexed
 

wheeler641

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I am so sorry you got this diagnosis, I have been reading your posts for awhile and I know how frustrating this has been for both of you. I myself am still searching for answers. I do not know how they can positively diagnose him with als with a clean EMG. I am no expert by any means, but I sure would want a second opinion before I resigned myself to the diagnosis. margaret
 

planningguy

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Erica,

I am so sorry to hear your bad news. I won't give up hope that its not something else, but your specialist seems pretty sure. We have some forum members with bulbar onset that have had minimal changes over several years, so that might be a small comfort. I will be thinking of you and your family.

Robert
 

CindyM

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I am sorry to hear of your husband's DX, Erica. The best I can say is maybe get a second opinion? Like Robert, I am hoping for something else!
 

rose

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Erica, I'm just so sorry.

The fact that his EMG was ok is still a good sign as far as progression goes. Erica, if you'd told me this time last year that I'd still have a voice, I might not have believed you, but I do. However, it continues to be my voice rather than speech that declines the most in the bulbar area, I think this is because my tongue is not yet the main player in it all. I think you've said your husband's tongue is not that weak yet either, and that his choking swallowing is more because of the epiglottis, (and presumably soft palate) which is also true for me. So, maybe he will have much longer than everyone seems to be predicting as far as vocal communication.

There is a website/ support just for kids and teens. I think that your daughter at age 9 is old enough to benefit from it. There is a link to it as a sticky towards the top of the general discussion forum here. I know the fear of the unknown is hard for everyone no matter their age, but I have not had to deal with a child coping with my diagnosis. There are several on here that have though. Jimmercat (CJ) , Brendapals, and most recently canfiet (Teresa) are a few, but there are others too.

Please know that we're here for you as best as we can be.
 

Zaphoon

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Erica,

A second opinion is always in order in cases like your husband's. Have them make their diagnosis as close to 100% proof positive as possible.

You and your husband are in my thoughts...

Zaphoon
 

suzannj

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Hi Erica,
I've been following your posts as well, and was so hoping that this news would not come. I'm so sorry for your family.

It may or may not be fruitful, but I have to agree with some of the other folks, I would get a 2nd opinion from an entirely new doc at a new neuro center just to be 150% sure. I'm so stumped that your husband has a clean EMG of his bulbar region . . .and yet has been diagnosed. I can't imagine what you are all going through, it must be very surreal. Losing the ability to speak would be devastating for anyone, but with your husband being an attorney the thought would be particularly difficult. Maybe Rose or Brenda or Beth can give better direction, but before his voice fades or slurring becomes a real obsticle, maybe you should check out some voice banking options. Just a thought.

Take care,
(((Suzann)))
 

Willow

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Erica... I am so very sorry for his diagnosis. I have no doubt you are all in shock right now. Sending positive thoughts and prayers your way.
 

Michael B

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Erica,
My 30 year old son was DX with bulbar onset ALS last May at Hershey Medical Center in PA. It has been a slow progression so far. This forum has really helped. We also got a second opinion at Johns Hopkins in Baltimore. I think with something this serious you need to hear it from two specialist. He is now part of the Knopp drug trial study at Johns Hopkins.
db
 

olly

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hi erica.
i am so sorry to hear your news,i was really hoping the clean emg and tremor you mentioned pointed towards something else.
as others have said it would not hurt to get a second opinion at a more specialised als clinic.
i really hope his progression continues to be slow and any meds keep it that way.
you are in my thoughts and prayers.
 

perplexed

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Thank you all

I'm in shock I suppose.
BTW, Caroline, the tremor wasn't one, so that wasn't part of the diagnosed. Just swallowing problems, saliva, and weight loss.

I definitely think a 2nd (and even 3rd, given the seriousness) is a given, and best from someone not recommended by this neuro as ideally you want someone outside their loop. The problem is that it is such a small applicant pool of these specialists.

What you look for in a second opinion is a neuro who says: I have a patient who presented with similar symptoms, but this is what we think....

Oh yes, though I realize I'm probably in denial/grasping at straws here, all these diagnostic tools - EMG, CTs, MRIs, PET scans - are only as good as those who read them. So it is also a good idea to get another look at the radiology/pathology results.
 

ktmj

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Dang Erica - hate to see each one of these posts. Sounds like you are holding things together even though I know it is tough. From what I have heard of his symptoms though I would think there is room for hope.

Don't give in - best wishes from me.

God bless you guys during this tough time.
 

lovelily

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So sorry Erica, to read this news for your family! God bless you all. I will keep you in my prayers.
 

Jules45

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Erica, very sorry to hear this. I'll pray for you and your husband tonight. Wish you the best moving forward.
 

thelma313

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Erica,

I was really hoping you would not get this diagnosis! I am so very sorry that you did. You and your husband are in my thoughts. My father was diagnosed in August here in Montreal and has received excellent care at the Notre Dame hospital. His neurologist is Dr. Souchon and he really likes her a lot. If you need any info, do not hesitate to ask. I know this initial shock is heart breaking and all I can tell you is that eventually you will gain the strength you need to face this challenge. You will also come to realize the sheer enormity of love in your family and from your friends. If there is one positive side to ALS, it is this. It spotlights the goodness in people and the truly important things in life.

Kindest regards,
Thelma
 
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