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

[DeeMichelle]

Dear Valya
I so sorry for you; your beautiful boy and all your family this is heartbreaking. You are clearly a wonderful mum. I pray that you're told something different on the 21st.
Dee

[Valya]

My son has his first appointment at the UC Davis ALS clinic this Friday. Below is a portion of an email from his neuro:

"I will be factual in my explanation about what is happening, the prognosis and potential treatments. However, I can not (and will not) tell him that he has a terminal disease because I have no experience with the prognosis of this disease in his age group. The closest thing that I can come up with is a patient of mine in whom I made the diagnosis of ALS when he was thirty-something about 15 years ago and he is still alive. Thus, I am moderately optimistic, we have so many resources now that we did not have even a couple of years ago and UC Davis is a world leader in the field of Hematology, Cancer and Stem-cell research."

It's not much but it's the first almost positive thing we've heard since early October. I feel like dancing!

FYI: I copied/pasted his email to post. Everytime I do that on this computer, it formats incorrectly on the forum, won't allow me to change it and makes me look somewhat less than intelligent. So if it looks funky, many apologies cause I won't know until i 'submit'.

[planningguy]

Valya,

I haven't posted before, but I have been reading this thread. I'm sorry for the tragic news, and will keep your family in my thoughts. I am hopeful in that, even in the wake of this news, that his neuro is striving to be so positive and supportive.

Robert

[rose]

Valva, You made me cry, I am so happy that he said this. The fact that there is so much new and ongoing research really will benefit your Johnny. My thoughts will definitely be with your and your family on this Friday. ((((hugs))))

[Zaphoon]

Valya,

I like the style of this next neurologist your son is about to see! He seems to have very good sense.

Zaphoon

[shrimpbox73]

You and your son are on my mind and in my prayers.

[Valya]

Thank you all for your good wishes and for continuing to care about my son. I'm sure you know how thrilled we are with the positive outlook his neuro is taking. He was hopeful even during our first meeting. Interesting, he peeked round the corner a few times at us sitting in the waiting room prior to that first appt. It would have been comical if I hadn't been so stressed.

We aren't anywhere near out of the woods yet but today I actually smiled at people and enjoyed a student rally. Hope is an awesome thing.

Will update Friday evening.

[Valya]

Our appt was for 8am, so we were up at 4:30am to make it on time. Nice drive past rice fields and we were buzzed by crop dusters on the way home, which is always a thrill.

We're finally getting smart and this time, I had the video camera to record jsut the audio. It's too difficult to write legibly and also take in what's being said. Yes, I know there are digital recorders but I have an multiple reasons for using a video camera. We also brought along our younger son, who's 15. He's great for comic relief and helped quite a bit to lighten the mood and keep Johnny occupied.

First off, he didn't say it was all a mistake and this one little pill will fix everything (was the hope in back of my mind ) The results are in for only two blood tests: Negative on the Kennedy Disease and liver func is OK. Beginning conventional treatment, he's starting Johnny on Rilutek. We pick up the prescrip tomorrow. He's referring Johnny to Dr. Jeff Rothstein, at Johns Hopkins, saying Dr. Rothstein was 'the top dog' in ALS research. He wants Dr. Rothstein to see Johnny because his age is so rare for this and because the potential for treatment at his age. We discussed stem cell treatment and he will refer us to the research clinic in Houston if we decide to go that route.

He continued to stress that Johnny's age is to his advantage with treatments and his general health and that we need to be prepared for the worse but to fight back.

The neuro is certain his diagnois/opinion of ALS will stand but won't make it official until after Johnny meets with Dr. Rothstein and all the blood test results are back. More genetic blood testing was ordered today, and also, a heavy metals, 24 hrs urine test.

Some of his physical symptoms have progressed just from the last exam, such fasc in his tongue and now he can't hold his index finger straight.

My husband and I walked out feeling positive but on the long drive home had time to think. This post will be too long if I type it all out but Johnny never even takes aspirin (SP, Srry) and Rilutek has so many side effects. I know that's lame

Over all, it was good but I don't know if the neuro was positive so we don't give up hope or if he was giving us hope which is based in reality, if that makes sense.

[rose]

Valya,

Well, you made it through the appointment, and all in all, other than the"oops we were wrong after all" scenario not happening, it sounds like you didn't have more disappointment thrust upon you.

I am so sorry that his diagnosis stands, but feel you have every reason to be hopeful that breakthroughs with treating this disease could be made with him. Anyone that falls out of the norm becomes of interest to doctors who's main focus is research. My own doctors have freely admitted that to me in reference to my own medical history.

About Johns Hopkins, I could write pages about how impressed I am by their entire facility. I see Dr Sumner as my primary neurologist, but also attend their Multidisciplinary ALS Clinic. Their combined knowledge, compassion and even their degree of organization is impressive beyond what there is space for me to write. Its like entering an entirely different level of medicine. I went to what were considered to be top doctors before being referred down there, so I wasn't expecting that much of a difference.After my first visit I was impressed, but after each subsequent visit, this is reinforced and even more so. You can count on them taking a personal interest in Johnny as well as your family.

He may do just fine with no side effects on the Rilutek, but even if he does at first (I did) most of the problems do abate for the majority of people after they've been on it for a while.

My heart really goes out to you, but I am reassured that it sounds like he will have the best of the best, and he's already got the best at home with a family that so clearly loves him!

(((hugs)))

[sharonca]

Thanks for filling us in Valya. Sounds like you are on the right track with the doctors. I took Rilutek for two months and then decided it wasn't worth it. No side effects though. Just didn't think it was worth the $1K a month. I also took Lithium for six months. No side effects there either and I did have some relief from hand cramping and mouth fascillations for four months. The researchers say there was no efficacy on Lithium but who knows. You can find out a lot about research going on with ALS at www.als.net.

Sharonca

[Valya]

Hello Rose. Thanks so much for your kind reply. You're right in everything you said. I'm happy to see such an enthusiastic fan of Johns Hopkins also.

Overall, it was good today, sometimes it all seems so big and I get scared. I'll be more optimistic after getting some sleep.

In the meantime, I'll watch some of the vids of Johnny playing his guitar

Planning on posting a pic of him soon, btw.

I know you have your own issues to deal with. Thanks again for your time and concern.

[rose]

Valya, when its our children, no matter how old they are, if we feel they are at risk, it is just so much harder than dealing with personal illnesses.

I can say that you will find ways to cope. with the concept, When my younger son was deployed to Afghanistan a few years ago, I didn't know how I was going to get through it, but I did, and then a few months after being back in the States he was re-deployed to Iraq, and again, I found ways to cope where my fears didn't rule my life. We he have such an instinct to protect our own, and when we find we are powerless to stop or change what is happening/may happen, the toll it takes can be heavy. (Happily he is back in Colorado again, and although there was talk of deployment, those in his company that were to be deployed have already gone. I can't relax yet, but its looking good)

You just keep loving him, and his brother, and trust that the rest is going to work itself out.

There are no guarantees in life. I often would think this when we were landing (I worked as a flight attendant) sometimes after we landed, especially if we had a school group on board, applause would be heard throughout the cabin while we were still in a high speed taxi, and I'd think to myself, didn't these people know, that if there was a "danger" it wasn't over while we were still barreling down the runway at over 80 miles an hour, and the real risk to safety would actually begin for them after they left the plane and got in their cars to drive home.

Just know that you've always got friends on here to talk to, you're never alone in this.

[Valya]

I've posted a few pictures to my profile page.

[trying to stay positive]

Hi Valya,
I haven't posted to your thread, but I have followed it. Just wanted to say how sorry I am for what your entire family is having to deal with.

And what a handsome son you have!

[brendapals]

valya,
I cannot imagine how you are feeling, but hopefully, you will get some rest. Like rose said, we will always protect our children, and you WILL find ways to keep all of this from taking over your mind. Your son needs you to remain strong and pro-active, and I know you can do it.
I hope you know we on the forum will help you in any way we can, make sure you rest and make every day count with the boys! I know you will.
I'm sorry I don't know anything about Johns Hopkins, but it sounds like you are in good hands,
I'll keep you and your family in my prayers,
Keep the faith,
hugs,
brenda