Update after appointment with Dr. Appel

[LukeL]

I know I started at thread back in August regarding my rather sudden onset of symptoms and a questionable EMG. As promised, I waited until my appt with Dr. Appel to return to the forum rather than unnecessarily pepper each of you with questions that you obviously can't answer.
So I figured I would give you guys who were kind enough to follow and participate in my thread a quick update.

After Appel met with me the first day (of the 3-day appt), they cancelled the rest of my appts for the week. Dr. Appel said that "I don't have ALS" because I don't "meet the necessary diagnostic criteria." He also said he doesn't know what is causing my issues, but there is no way he can diagnose me at this point with ALS (mainly b/c of my strength and initial EMG in August) He said, "Could it be early ALS? Yes...Is it? Not right now." No additional EMG was performed to see if I had additional denervation in other parts of my body (beyond my right arm). I assume he felt it was too soon to conduct another. One area involvement does not meet the parameters for a definitive diagnosis.

He's just not trying to figure out what it is, which makes me think he feels that it's likely ALS but would rather not say anything unless it's definitive...which is typical of this terrible process of elimination. He gave me an arbitrary diagnosis of "cervical radiculopathy" because they can't pinpoint the real underlying problem. It's important to note that one of the best neurosurgeon's in Houston said I do not need surgery and referred me to the Baylor ALS specialist. I chose to see Dr. Appel instead.

Since I last posted on this forum, my symptoms have progressed. My twitching has continued unabated in my upper arms and has moved into my forearms a bit. I cramp in my upper body when my muscles are engaged (then they release and fasciculate)...weird phenomenon. My twitching is pretty much everywhere now, but I'm grateful that I have experienced no additional weakness. I'm not sure what the "typical" timeline for a person with ALS is between fasics and weakness. My presentation seems odd.

Dr. Appel started his commentary (before my neuro exam) by telling me that he "doesn't like telling people this and especially people my age." I thought he was going to tell me I had ALS, but then he went off on a tangent about me trying to figure out what is going on rather than living my life. Kept saying he was more worried about me psychologically than physically. Kind of a mind f$&@. Anyway, now I just sit and wait to see if my symptoms progress, stabilize or resolve. Reevaluate in 6 months or sooner, if necessary. (EMG, neuro exam, etc.) Fun stuff!

 

[Nikki J]

Thank you for the update. I have been wondering how you were and I know some other people were as well.
This must be a lot to process as you were surely expecting more definitive answers. But that ALS is not a slam dunk is a very good thing and the advice to live your life is good. If it is ALS( I still hope not) it will sadly find you. No need to chase it! And if it isn't well the worry is needless
Thanks for stopping by! Hope your next update will be even better news!

 

[LukeL]

I agree. You're so thoughtful for checking in. I truly appreciate it

 

[cheerleader]

Luke, hope you really are not "sitting and waiting" to see if it progresses! What a waste of your youth! Go out and live and find some new interests. If you can get your mind off it, some of these symptoms might abate. Good luck to you.
Worry is a terrible time waster, for it won't change anything.

 

[LukeL]

I'm trying not to just "sit and wait." But it's tough to not have an explanation for what's going on with my body. Makes it more scary that ALS is the one diagnosis here that doesn't have an explanation.

 

[MaxEidswick]

>Thank you for the update. I have been wondering how you were and I know some other people were as well.

Ditto that!

>After Appel met with me the first day (of the 3-day appt), they cancelled the rest of my appts for the week. Dr. Appel said that "I don't have ALS" because I don't "meet the necessary diagnostic criteria."

did he say what? you can always ask for a 2nd opinion over at baylor, but Appel is considered #1 or #2 in the world of ALS. I was also prediagnosed at noon on my 1st of the 3 days -- unfortunately :-(

 

[LukeL]

Can anyone relate personal experience with their timeline from onset of fasciculation to actual weakness? I noticed atrophy in my right upper arm (seemed quite spontaneous) followed by localized twitching. The fasciculations soon spread everywhere in my body (within weeks). As I mentioned earlier, the twitching remains constant in my upper arms and chest. They just typically flicker everywhere else. I have 10s of thousands a day, but no additional atrophy or weakness in the last 3 months. I know everyone is different, but it would be nice to know what some people have experienced. Thanks!

 

[affected]

Luke honey, Dr Appel I think hit it on the head.

Your psychological state is of far more concern than your physical and Dr Appel stated this to you.

As Nikki said, if it is ALS it will find you, that's for sure.

But you are ruining your life by fixating on it and even Dr Appel said he can't say this is what is going one, and said it very quickly.

Please, let this go, find some therapy and something you are really interested in and throw yourself into that. Honest, if it's ALS you will wish you had done so many things.

It took 9 months to diagnose my Chris and we lived life to the fullest without the shadow of that diagnosis hanging over us. You need to take all the positives in that appointment and get help. First positive - within the first day you were told that you don't meet the criteria to be diagnosed with ALS - CELEBRATE.

Update us in 6 months certainly after you have been re-evaluated and had another EMG, but if you develop any real symptoms in the meantime (not twitches or cramps) then get to a doctor and have it sorted before you ask us what we think.

You still don't understand that the PALS here have too many health issues to sit and type answers to your timeline questions, you will have read us here discuss many times all these things. Please we can't babysit you through, you need to go and get real help.

All the very best.

 

[LukeL]

I do understand that PALS may not have the energy to type and answer my questions. And obviously they are in no way obligated to do so. I don't need therapy. I just want to know what is wrong with my body. I'm a 34-year-old active athlete that twitches in cramps all over his body. It's not like I have some weakness in my hand. It's tough to forget.

And I will live my life. I always have. But if I have ALS, I'd like to know, so that I can be damn sure to spend every dime in my 401(k) and travel the world while I'm still functional. I'm doing my best to stay happy and surround myself with those I love, but being in limbo still sucks. I just want to know what the heck is going on. Hence, the questions to other people who may have experienced similar symptoms to me. Again, I am not demanding answers I am just politely asking if someone had time to let me know their personal experience around fasciculation and the eventual onset of weakness. I've googled the hell out of it and can't find it. That's why am asking. Sorry if I am a burden in any way to anyone. That is not my intent.

 

[Nikki J]

For the record I messaged Luke and asked for an update which I think is why he returned.
Luke, I think you are not finding much because that is not how it generally happens. I think most people notice weakness first then twitch. I did with a three week interval between weakness and twitching. And no atrophy yet, knock on wood.
I understand limbo is hard but it is better than being diagnosed. I get what you are saying about living differently but there is a happy medium between spending the 401k and not enjoying each day for what it is. At least I hope there is. Make your bucket list. Everyone should. Pick something and plan it. Do it and repeat. Not everything you want to do is going to cost a zillion dollars I suspect.
And try to be grateful for what you have today. I consider every day I can get out of bed by myself a good day. Anything more makes it a great day. ( and I can always get up and always do more so far but I know too many people here can't so you and I are lucky if we can). I know I sound like Pollyanna but I have lived with the shadow of ALS for a long time. Please don't let it take you down any sooner than it has to. I know you mentioned OCD before. If you need help focusing away from this while you wait please get it.

 

[MaxEidswick]

> I'm a 34-year-old active athlete that twitches in cramps all over his body.

try potassium

 

[ECpara]

Luke, my husband had fasciculations 3 years ago when he was first diagnosed, mostly in his tongue but mildly in his arms, too. Although he lost use of his tongue within a year and a half; his arms, shoulders, neck and diaphragm have only recently begun to get noticeably weak. He still continues to have many fasciculations in these areas. Everyone is different, it's impossible to make comparisons. But that is what my husband's experience has been.

 

[LukeL]

ECpara, thanks so much for the response. Seems like your husband had more bulbar onset than limb. And you're right, everyone is so different. So much so that I haven't heard/read about a single person who has similar symptoms to me. Not only do I twitch all over (face to feet), but I often twitch HARD. My triceps continuously fasciculate but will sometimes just shake rhythmically. And when they're bad (Klonopin helps), the twitches just jump around all over my body...kind of flicker from spot to spot. If I didn't have the atrophy in my right arm and upper chest, along with a "dirty" EMG in that arm, I would think BFS.

I guess I'll know one way or another soon enough. Just wish there was some kind of tineline for twitching to weakness so I could feel more comfortable. It sucks not knowing what wrong and not finding a doctor who is willing to tell you...or at least try to.

 

[MaxEidswick]

>Pick something and plan it. Do it and repeat. Not everything you want to do is going to cost a zillion dollars I suspect.

words of wisdom! We jast made plans for another tripto Aruba in January!

 

[LukeL]

>did he say what? you can always ask for a 2nd opinion over at baylor, but Appel is considered #1 or #2 in the world of ALS. I was also prediagnosed at noon on my 1st of the 3 days -- unfortunately :-(

Hey, Max. I figure if I go see Dr. Harati, he'll likely feel the same way as Appel. Only way I could possibly get a diagnosis is to conduct another EMG, which Appel didn't think was necessary this soon after my first one (8/20/14). He also said insurance probably wouldn't cover it either. Have my symptoms spread and become more pronounced in the last few months? Yes. Does that mean a new EMG will show active denervation in the requisite 3 areas to defintively diagnose me? I have no idea.

As I said before, my onset of symptoms is obviously not textbook. Typically that would give someone hope. But I'm having a hard time getting past the fact that they aren't even trying to figure out what's actually going on...you don't just say, "well, you're twitching everywhere, cramping in your upper body, and your EMG shows active denervation in the right arm with noted atrophy, but we'll just sit and wait to see if it gets worse or not." WTF? Atrophy is never benign. Try to determine the cause, doc. Don't just send me home telling me to live my life. I obviously saw Dr. Appel for assistance with a diagnosis. I didn't expect him to act like a pseudo-psychiatrist.

So grateful that I "don't have ALS" but still wish he was trying to uncover a diagnosis.