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

[rose]

Valya, Just keep the faith. I do not know how I could begin to walk in your shoes. The thing that continues to stand out is that the odds of your son having ALS are almost infinitesimal. Lets just hope and pray that the bloodwork turns up something to give the doctors insight.

How is your son? How were his spirits after the appointment?

I'm so glad that you have finally gotten in for this appointment. Please continue to let us know what you find out.... BTW, is there another appointment scheduled, or is it to happen after all the lab work is in?

big ((hugs))!

[jennibf]

As a mom, with a son that age, I cannot imagine how you must be feeling. How is he coping? Does he know much about ALS? I hope the bloodwork shows a deficiency of some kind, what about lyme disease? That's what my husband keeps asking them about me.

[Valya]

Hello Rose. Johnny's younger brother developed T1 Diabetes three years ago, literally 3 months or so after a full physical which included blood/urine testing, at which time he was fine. If you look back through photos you can see Johnny's hands becoming gradually thinner and thinner since about the same time his bro developed diabetes which means Johnny's actually had what ever he's got for several years. (Which causes untold guilt on my part that we didn't see it sooner.)

We did inform the neuro about the diabetes and showed him the photos which he seemed to study intently but then dismissed. The 'autoimmune specialist' as he said, didn't seem too interested, tbh.

Both boys have been so healthy their entire lives, rarely any colds, flu, etc. They missed so few school days, I used to give them mental health days off from school occasionally. They just were never sick. How can two extremely healthy boys develop such serious health issues at approx the same time? Probably a coincidence but it seems strange and makes us think autoimmune for Johnny also, especially considering his age as you said.

He was fine after the appt. It's a 2 hour drive to Sacramento and he slept in the car on the way home. He's reluctant to talk about his symptoms-I think he thinks his parents will 'fix it'. He's the kind who perfers to be invisible, rarely asking for things. If he can't cut his potato, he doesn't complain, he just rips it apart instead.

His next appt is on January 6, but we may be able to get it moved up if all the results are in.

I know you have your own health issues to deal with. Thanks so much for your concern and take care of yourself. Go have some fun for me

[sharonca]

I couldn't tell from your postings if the next doctor you will see specializes in ALS. My first neuro - just your regular neuro at a local clinic - kept insisting what I had was not serious. Then another older neuro said that the EMG I had previously was done by a "quack". That is when they decided to send me to UCLA to a neuro ALS specialist. That specialist did the EMG himself and would have given me the results right then if I had not been alone. My experience is that these major clinic neuros have the experience to dx ALS and other diseases as well. The elimination process is quicker for them since they have vast experience.

I'm not saying I think your son has ALS. I'm just saying I wish I had a magic wand that could eliminate all the waiting for you. Jan 6 for an appt is just cruel.

I would be and have been a real pain in the ass trying to get info. Turns out I found out that I have ALS because the phone number they gave me for the "special" clinic was for ALS patients only. If I didn't have it he would have told me the day of my EMG. I couldn't get info out of his staff so I looked at the phone directory for UCLA and found that the number they gave me was for the ALS patients only clinic. Doctor thought I was pretty clever - I suggested if he wanted to keep that info from patients he should change the name on the web site directory.

My prayer are with your family.
Sharonca

[awieleba]

I just pray for your family and stength! When something is happening to our children, we would rather it be us. It is sooo hard and I can not even begin to understand what you feel, I just know that I feel for you. I will be sending you and your family peacefull thoughts.

Does your son have a computer? has he looked into this? i am not prying, I am just wondering how someone so young is dealing with this. I agree, I think he thinks his parents will handle this.......

blessings

april

[Zaphoon]

Valya,

It sounds like the neurologist your son was seen by wants to put you into the hands of someone who is more familiar with the sort of symptoms and clinical picture on hand.

(no pun intended)

This to me would be very reassuring. You know the next doctor is going to be even better than this last one. Some of those students they keep in tow can be a real hoot!

I'm off to my next appointment on Thursday and I'm hopeful for a few answers myself.

It sounds like your son has a really good attitude in all of this. I commend him (for what its worth). I'm sure if I were 18 with what's been happening to your son, I'd be a complete nincompoop (sp?) to one and all.

Zaphoon

[Valya]

Sharonca: I generally try the nice, honest, genuine approach first as that's kinda how I am...which is both good and bad, tbh. That usually works wonders. If that fails, the She-Wolf will come blazing out with all cannons firing. I have no problem with being a pain in the ass when necessary, especially when it comes to my kids.

A shame you had to be your own detective to get infor but very smart. Thanks for your prayers. ~~ Valya

[vmd]

Let's all pray your son will be fine.

[Valya]

Zaphoon,

I believe this second specialist was just for the actual EMG testing and not for ongoing patient care, although perhaps we misunderstood. In either case, I do find it encouraging because the more specialists who see him the greater experience to draw on for an accurate DX. I just wish he hadn't said several times 'specialist in EMGs for ALS patients'.

I honestly wish my son would talk about his symptoms but he just says he's ok. He was depressed for a couple weeks after our local doc blurted out his opinion but he seems fine emotionally now. I would be a total wreck. I just wish it were me and not him.....

Good luck at your appt on Thursday. I hope you get some answers

[Valya]

Hello April,

I would sooo rather it were happening to me and not my son. We still can't believe this is happening, it feels like a horrible dream. Sometimes I wake up and feel ok, then it hits me like a house just fell on my chest or I'll have awful dreams and wake up crying.

There is a deep sorrow and saddness that never lifts and I'm so angry this is happening to him. He's one of those 'perfect' kids, A's all through school, respectful, funny, great sense of humor and a good, kind heart.

He spends a lot of time on the computer and has looked up ALS but won't talk about it. I really think he's either in denial or believes his parents will 'fix it'. And what happens if it's not fixable? How in the world do we look into those big blue eyes and tell him that?

Thanks so much for your prayers. Take care.

Valya

[Thumbs Up]

My prayers are with your family.

[Valya]

Vmd and Thumbs Up: Thanks to both of you for your prayers

Received some good news just a bit ago..

We were told to wait til next week to call about the EMG appt, so naturally, my husband called today. He was given an appt for Nov 26. The office called back almost immediately, saying that we already had an appt on NOV 5!! Wow that's next week! The neuro we saw, Dr. Richman, has already spoken to the EMG/ALS specialist specifically about Johnny and he wanted an appt as soon as possible.

[Zaphoon]

Valya,

That is terrific news! You just have to love the short wait times!

Zaphoon

[rose]

That is great news too (now, see, you're on a roll) this should give you much needed information. Valya, Laurel's husband has MMN, I don't know how much you've corresponded with her or not, but she was very involved with his diagnosis process, maybe if you haven't already, you can ask her how her husband's EMG test results were interpreted, etc. (just a thought). I remember that she said at first it looked very much like he had ALS before the MMN diagnosis.

I'll be thinking about you guys next week.

[CindyM]

My thoughts are with you and your son, Valya. I hope the specialist can find something other than ALS! Regards, Cindy