Need your expert opinion....please

[LukeL]

First and foremost, I want to apologize to those responders who are afflicted or have been directed impacted by ALS/MND. I do not have a diagnosis yet, but fear has consumed me. I have a history of depression, severe anxiety and obsessive compulsive disorder. Ever since my first fasciculation, I have been an absolute basket case. My story is as follows:

I'm 34 years old and a very active person. I workout at least 5 days/week with weights and an very aware of my body. I randomly noticed about a month ago that my right upper arm had lost mass and there was a commensurate loss of strength. It's odd because I can't pinpoint exactly when either occurred, but it seems like I noticed the strength difference around the time I noticed the atrophy. It definitely isn't "perceived" weakness either. I can lift definitively less weight with my right arm, especially with tricep, shoulder and chest exercises (biceps are still fairly even). Make no mistake, I am not weak...just weaker than my baseline. I was obviously bothered by this unexplained change in strength, but no morbid thoughts initially crossed my mind. I became gravely concerned about a week ago when I noticed twitching in the area of atrophy (tricep). A little Google action coupled with my already detailed history of anxiety/OCD led me directly to ALS. Within a week, my fasciculations have spread everywhere. My right arm (tricep especially) is still by far the most common site of fasciculation, but I now have them intermittently in my feet, calves, left upper arm, and forearms. The twitches in my tricep and calves "pop" in and out, while those in my bicep actually shake (just once) the whole muscle. I feel slightly more spastic on my right side (arm/leg) as well, but that could admittedly be in my head. I am fully aware that anxiety can exacerbate fasciculations; however, I have had anxiety (severe on numerous occassions) for almost 20 years and have never experienced "twitching" as a symptom.

Nevertheless, I was able to get into a neuromuscular neurologist rather quickly and went through a full neurological exam yesterday. Not surprisingly, I passed with flying colors. Because my baseline strength is already so high, I exhibited no weakness during the test. Despite diffuse fasciculation, my tongue was clean and reflexes were basically symmetrical. I have blood work, an MRI of c-spine and brain, a spinal tap and an EMG scheduled over the next 2 weeks. Nevertheless, fear has overtaken my entire life. I'm not a strong person given my psychological history. I just want any opinions from the group on my seemingly odd progression of symptoms. It seems like the mild atrophy/weakening was only noticed because of my weight lifting. The fact that I have no other evident weakness yet have body-wide fasciculation seems odd to me...very progressive. I would default to BFS, but the "coincidence" of fasciculation onset coupled with the focal upper arm atrophy (about a 1" loss of mass; 15.25" right vs. 16" left) and weakening seems too incriminating. Any thoughts as I await further testing? I sincerely appreciate your thoughtful replies. God Bless.

 

[Nikki J]

There are many causes of weakness and atrophy. I understand that you passed the strength test but it possible mild weakness would not be detected I agree. However if there is atrophy the neurologist would see it. Did they?
In my opinion the generalized twitching is a very good sign. ALS twitches are the distress signals of dying muscles. You would not have diffuse twitching caused by early ALS

What did your neuro say? Did they seem concerned? Or are they doing the EMG to make sure or to reassure you?

You know you have anxiety you do not have long to wait for the EMG but please spend that time doing something other than researching ALS and hanging out here. You know it is going to make your anxiety worse. Use whatever anxiety tools have worked before. See your regular physician if it is not working ( or mental health professional if you have one) come back and tell us what happens. I expect good news which we love to hear!
Best wishes

 

[LukeL]

Nikki,

Thanks for the thoughtful reply and kind wishes. My neuro did notice the mild atrophy. She is running a comprehensive panel of tests to rule out ALS/MND. She didn't seem overly concerned, but then again, I'm young and only have mild weakness in a localized area. If I do have ALS, I likely caught it early. The diffuse fasciculations are bothersome and scary. I can feel my tricep twitching rapidly under my skin when I grasp it with my other hand...weird feeling that subsides when stretched or flexed. You're right about the internet. It's making me insane. I'm going to try and stay away as best I can and just continue to pray...not just for myself but for all of you as well.

Thanks again,
Luke

 

[LukeL]

Any other thoughts from experts on symptoms, experiences and diagnosis?

 

[Mediasmart]

You won't get a diagnosis here nor should you look for one. As to experiences; ALS is different in everyone..there are no rules. ... and having the disease doesn't make anyone an expert. We just learn as we go along.

One thing we do learn, however, is patience. You need to learn that and need to get over your pre-occupation with your health and your body.

 

[Atsugi]

You wrote: " A little Google action coupled with my already detailed history of anxiety/OCD led me directly to ALS."
Google directed you here because so many people who have your symptoms, who don't have ALS, have posted here.

"very aware of my body. "
Maybe too aware. Such a small change in muscle is not necessarily indicative of a fatal disease. Could be many, many other things.

I'd chalk up the twitching to age and nerves. It just doesn't sound like ALS to me. I agree with others who say you should not concentrate on ALS, but wait for your EMG. Good luck to you.

 

[LukeL]

Thanks. I've just never fasciculated before. I feel like it is a very odd coincidence to have weakening and mild atrophy followed by my first extensive twitching experience. That's what brought me to this forum. I mean no offense to anyone, and I sincerely appreciate the thoughts/advice. God Bless you all and your daily fight.

 

[LukeL]

Thanks, Dusty. I sincerely appreciate the thoughts. I agree with your assessment. I guess I'm just very ignorant to the typical course of symptoms...does atrophy precede or proceed clinical weakness? How fast does weakness progress to become a functional impairment? It seems like everyone is different, so I'll just have to wait for my test results and see if I digress beyond my current strength/weakness level. Thanks for the well wishes. I know my fears pale in comparison to your reality. I'm truly sorry, and thanks again for taking the time to respond.

 

[MaxEidswick]

>That doesn't make me stupid.

there is a difference: stupid is as stupid does, but idiots lack the common sense to stand aside and wait for real info instead of whining for support here, where we can give none other than to tell you to wait and see an ALS MND specialist ...

 

[LukeL]

I've seen a specialist and am awaiting my battery of tests. I am not whining for support. I was just looking for opinions/information in the interim. Again, sorry to have upset you...obviously not my intent.

 

[Dusty7]

Luke, I don't think there is any "normal" progression with ALS. It's not like some illness that starts with fever, is followed by chills and then a rash develops three days later... if you get my point. Every path of progression seems to vary an if I tell you a certain way is normal, I will have umpteen people tell you that's wrong.

For many people, weakness is the first symptom because they fall on their face... repeatedly. Then they examine their leg that gave way and find atrophy. Which came first? Who knows.
For others, they (or someone else) will see atrophy and they will then realize that arm, leg, thumb, whatever are no longer able to do certain things.

The important point is that when you have clinical weakness, you will know it because you won't be able to do something. The clincally weak muscle will fail. Being able to only do 50 curls instead of 100 is not clinical weakness. Not being able to do one (at your normal weight) is. Running a mile in 10 minutes instead of 8 is not clinical weakness. Not being able to run (or walk) without stumbling because you can't lift one foot off the ground is. No pone has to wonder if they have clinical weakness. It is very apparent. There is no missing it. When you get out of bed and fall... when you drop a glass of wine because you have no pincer grip with your thumb... those are signs of clinical weakness. And they are as clear as wine stains on the carpet.

 

[Atsugi]

Very good description, Dusty.

I'd add that, overwhelmingly, most people who think they might have ALS are just wrong.

LUKE: Here's a "typical" progression, if there is one. My wife fell over one day. Just fell. The foot no longer worked. There were no twitches or atrophy, just the nerves in her brain didn't send signals to her foot anymore. Doctors ran many tests on this obviously paralyzed foot and found ALS. During the next nine months, her legs and arms and chest and neck all fell limp and eventually her lungs didn't clear out the CO2 in them, so she went to sleep and died.

I doubt sincerely you have ALS. You symptoms just don't sound like it. And it could be so many other things. Hundreds of non-fatal problems could cause what you have. Best for you to be patient, wait for your appointment, and worry that you may have any of hundreds of things, none of which are fatal. Don't sweat the ALS.

 

[LukeL]

Thanks for the thoughtful responses, Dusty and Atsugi. I appreciate the time you took to compose them. All my tests are next week. I'll try my best to not sweat the ALS.

 

[bluedog]

A spinal tap is an invasive procedure with significant potential risks. For ALS testing (you said your dr is trying to rule out ALS/MND), a spinal tap is usually done after all other testing as a Hail Mary last-ditch-effort to rule out anything else. At this point, you are just a guy with twitching and some slight atrophy. I know you are weaker, but that wasn't noted by the dr.

I would have the MRIs and EMG, discuss the results with your dr., and then discuss with her what the purpose is of having a spinal tap. For all you know, you are completely healthy or hurt some nerve from lifting. Why risk having a spinal tap at this point without a solid reason to have one.

I've been going to top ALS drs for two years now, with progressing symptoms and worsening EMGs, and no one has even remotely suggested having a spinal tap. Go to the Mayo site, and look at the standard testing for ALS. It doesn't include a spinal tap.

Sure, if you had MS symptoms too, it would make sense to have a spinal tap, AFTER the EMG, depending on the EMG results. But you don't.

 

[AfraidButNotAlone]

Closed one thread and daftness proves to have migratory abilities...