Doc said..your 18 yr old son has MMN or ALS - Page 3

Valya · 10-19-2008, 08:45 PM

Hello Northerngirl.

Will try again tomorrow to get his appt moved up.

It's incredibly difficult seeing him unable to do more and more as we wait for this appt. Today, he was filling a mug from one of those push spout cooler jug thingies and holding the mug with his left hand, the weakest. He had to switch to his right before dropping the cup. He also can't hold a plate with his left thumb/index finger, instead he uses his four fingers to press the plate against his palm. He has developed other compensations also, all the while we wait, sooooo frustrating

Wondering at what point he may have problems at his work because of reduced strength issues.

I think his hands were cold during the exam because he refused to wear the gown and the room was chilly. He only wore his shorts. He does spend a lot of time on the computer but his posture appears good to me.

I hope that is helpful information to you. Let me know if I can add any further details.

Valya

sharonca · 10-19-2008, 10:50 PM

My heart goes out to you. If you are looking for another place for an opinion I'd try Stanford. I have heard great things about their clinic. You just want the best for the best - your son.

Maybe when you have a real diagnosis for your son - that doesn't include ALS - you can go back and educate that doctor on what he should have said - he doesn't know so he is sending you to a specialist in diagnosing hard to diagnosis conditions.

Not knowing is the worst. I'll pray for rest for you and yours.

Sharonca

TanDaMay · 10-20-2008, 10:42 PM

Vayla - please keep us posted or send to my personal email address: lindafgibson@tx.rr.com
My daughter was DX when she was 23 - that was 14 years ago - I so know what you are going through -

Linda
my blog - Marcie's stories in May listing

http://linda-frances.blogspot.com/

And I am new to this site - still trying to figure it out

northerngirl · 10-21-2008, 11:25 PM

Hi Valya,
The day do drag on. I was wondering about TOS but I t has alot to do with posture as well. Hope you are having an OK day today.

SMillheiser · 10-22-2008, 01:23 AM

Valya,

I am meeting with one of California"s most respected ALS specialists tomorrow. I don't have ALS, but run a foundation to help patients with ALS. His name is Dr. Mozafar and he runs the ALS clinic at UC Irvine hospital. I'm sure many of the Southern California patients on this board have seen him or know of him. If you'd like to take your son to see him, I'll make the call for you. I would be glad to pick you up at any area airport.

I also have a neurologist that helps me and is a personal friend. If you'd like to talk with him, let me know. He'd be glad to call you.

You can call or email me at any time.

Stu
Angels4ALS@aol.com
949-233-3045

CindyM · 10-22-2008, 10:28 AM

Quote:

I would be glad to pick you up at any area airport.

Just a reminder, everybody, that all parties need to exercise caution when making plans to meet each other face to face. The anonymity of the Internet can make for some unpleasant surprises. Pleasant ones, too, because for every horror story I read, I hear of people who made life-long friendships.

Just be careful, is all.

Cindy

SMillheiser · 10-22-2008, 04:50 PM

Cindy,

Do you think I'm a risk? There are PALS on and off this board who I've driven to doctor's appointments, helped to the bathroom, dressed, fed, and taken care of when their CALS were away.

Stu

sharonca · 10-23-2008, 11:42 AM

I have met with Stu quite a few times - in person. He has even been to my house! So as a pALS I'm saying he's not that scary!!! Stu - you are always a treat to be around!
Sharonca

Valya · 10-26-2008, 03:29 PM

Hello everyone. I haven't been on for a bit, trying to get my head straight. I've come to the conclusion that's an impossibility lol. I had a bunch of st00f typed this morning, got interrupted and it went away after clicking submit

Sharonca: My father-law went to Stanford. Thanks for the idea. I already have a carefully worded letter for the doc who blurted out that hasty DX so that perhaps he won't put another family through the hell we've gone through. Thanks for your good wishes

Linda: So sorry to hear about your daughter DX when she was 23. My heart goes out to you also. I've added your email to my email list and will check the blog soon. Tried to add you as friend as requested but it won't let me. I'm probably doing something wrong, since I do have one added successfully (ty l4dybugg

). Will keep working on that one...

Thanks for your support and good wishes.

Stu: We used to live in SO CA and still go down to see relatives. After every trip we always say we're never going down there again but next year, there we are, HA. And no, it's not the relatives

We will see what happens with this doc at UC Davis. If you believe the internet, he's extremely well thought of. If a second opinion is needed, perhaps we can plan another trip to SO CA and US Irvine. I've heard good things about the ALS clinic there and it would be wonderful to have a contact there. Thank so much for the offer, it's MUCH appreciated. I've added your email also and thanks.

Cindy: Thanks for jumping in with cautions about meeting in person. There are a lot of horrible stories out there and it's good to be reminded. Shhh...don't tell Stu but I'll be sure there's a crowbar under the rental car seat.

----
It's overwhelming seeing how many people care and how many are affected in different ways by ALS and related illnesses. The 'average' (what's average now adays anyways?) has no clue. None of the very few people we've told have any comprehension the reality of ALS. Coming here even to just read is so helpful.

My deepest thanks to everyone who has posted their prayers, good wishes, advice and knowledge. This is a good place to be.

L4dybugg · 10-26-2008, 03:38 PM

Hello Valya,

Just been wondering how you and your family have been. Just wanted to let you know, that I'm still praying for you and your family.
Take care hon.

Hugs to ya

Lori

Valya · 10-26-2008, 04:42 PM

Hello Lori.

Thanks for your thoughts and good wishes. I continue to pray for you and your family also.

Valya

awieleba · 10-26-2008, 11:34 PM

Valya

I really have been thinking of you. it must be soo hard dealing with this. It would crush me if one of my 3 young kids were sick. I just pray for you and your strength as a family.You are such a caring mother to come here for support and answers and I wish you the best

blessings
april

SMillheiser · 10-27-2008, 02:43 AM

Valya,

I spoke with my parole officer and he said it was ok to drive you around. The only caveat is that I cannot be within 100 yards of young children or near an elementary school.

Stu

rose · 10-27-2008, 08:32 AM

Stu, You're a hoot! but a hoot with a heart of gold

Valya, hang in there. Any luck with getting the appointment moved up sooner? (hugs)

Al · 10-27-2008, 12:38 PM

OK, point taken Stu. Good comeback. I don't think anyone meant any malice towards you or anyone connected with your Organization or members of the forum.

AL.