Atypical Symptoms of ALS?

[Clearwater AL]

Micheal, you wrote above...

"Also got a Creatine Kinase test. This was normal a few months ago. Supposedly, only about 40%
of ALS patients will have a slight to moderate elevation anyway. Not a negligible number but not
specific enough, I think you will agree. "

No.... I don't.

Reading your posts it is clear you have dedicated too much time researching ALS. You're making
your situation worse by nearly convincing yourself you are looking at having ALS. You don't.

I agree with "Affected.... there is nothing more anyone here can help you with. Posting any
further will only generate our same responses.

 

[Michael949]

I do appreciate and am taking in everything you guys/gals are kind enough to be communicating to me. It is not falling on deaf ears, believe me.

I guess there's just some symptoms that have been going on that I did not* post about earlier because I was not aware they were also possible symptoms of ALS.

I will not bombard anyone with anymore questions after this last post. I promise. I would just like to get some insight on something else that just got worse within the last day or two.

You're familiar with the anterior tibialis muscle? I had gotten pain and tightness in the left anterior tibialis muscle back in July but the severity lessened within a week, so I didn't think much of it. It never fully went away though. Since yesterday, the pain suddenly flared up and there is a twitch on that exact muscle that goes on for 15-20 minutes at a time. It does not go away with movement. There is also tightness, like what I've heard people describe as spasticity or rigidity. The tonality is noticeblae larger than the right when I flex as well. And notice, this is the area of weakness in the left leg when I walk.

I will discuss with the neurologist on my next appointment, but have any of you experienced this in your journey? Thank you.

 

[Bestfriends14]

No, now please follow up with your doctor. This is not a general health or health anxiety forum. All further questions should be directed to your doctor.

Good luck to you.

 

[Clearwater AL]

"I will not bombard anyone with anymore questions after this last post. I promise."
......................................................... YOU ......................................................................

Do not post again until you can post the last page of your EMG report with the
"Summary/Conclusion paragraphs.

There is no reason for this Thread to ramble onto 3 pages.

 

[lgelb]

This is not directed at Michael alone, but at many who post in this section. Whenever you are reduced to describing sensations as "like" someone else's descriptions or some other vague benchmark, e.g. pain, tightness, stiffness, "flareups," perceived weakness, etc., you are seldom anywhere near ALS. In ALS, muscles don't feel like anything; they fail. They do not work any more. Ever. As you can imagine, a doctor and EMG machine typically pick up right away that something is wrong.

Most people who post on Yelp, Michael, are not able to be objective about their medical visits, which are scary and stressful on many levels. You might at least call the office, have a conversation with whoever answers the phone, and make your own evaluation.

 

[Michael949]

Absolutely, Laurie. Studies show patients are more likely to leave a negative review when going out of their way to comment on Yelp. And vice versa - some doctors actually buy positive Yelp reviews. My choice not to go with the other practice is, after visiting their web site, based on the fact that they mostly focus on Parkinson's and other movement disorders. I felt it would be best to stay with this neurologist for now.

I hear you loud and clear about the symptoms. But if you look at all the major ALS organizations and even what neurologists who specialize in ALS say, you will see over and over again, that stiffness and tightness are some of the early signs. You will hear patient say things like "In Dec 2014 my hands began to FEEL stiff." Not just that they won't move, but these patients are feeling something. Or they might have pain from a muscle cramp, which is also one of the earliest signs. This is not about me. I'm no expert and obviously have not been diagnosed yet. Just saying that I don't believe in speaking in absolutes because every patient presents with a different onset of symptoms.

 

[Nikki J]

We are not here to argue. You can take comments out of context and find support for practically anything. Stiffness is generally code for spasticity which any neuro- any doctor would have found on exam and told you.

you had an exam apparently free of upper motor neuron signs and were told ALS is unlikely.

i am closing this thread do not open another unless , as seems unlikely, you have an emg and exam diagnostic of ALS