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sjtom

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Hi, I have been to Neuro several times and have an appointment at a specialist this week.

I have always had tight spastic muscles- I see signs of slight atrophy symmetrically. Both foot arches calf’s.

But I am wondering if it is normal to go from spastic to everything going to mush in a week or two. My skin is loose now as well...

I have hyperreflexia/ no babinski.

And mild weekness- my arches hurt and every bone in my body is cracking since my muscles went limp. I’ve had all blood test- no problems in the blood.

Tom
 
How'd you write this post?
 
Atrophy is by definition non symmetrical. In ALS you do not normally present weakness that fast and certainly not the same on both sides. Symmetrical loss of bulk is usually described as weight loss.
Vincent
 
I agree with Vincent. ALS does not present this way. You do not have ALS. Also, perceived weakness is not the same as failure of muscle function. Have you had difficulty walking on your toes or heels? Have you fallen? Do you have trouble turning a key or opening a door handle? Those would be indications of failure. Going flaccid in a week is not ALS.
Clearly you have something else going on, so I’m glad you’re seeing a specialist.
 
Thanks for the reply.

I have tripped but my weakness is not as extreme as you described- but it’s been a major change from my norm.


I have an appointment at Jefferson this week. I’ll report back.

I also have crazy buzzing in my fingertips. Grooves in my nails, odd skin- my socks leave marks now.

Thank you
 
sjtom's thread

Sorry Nikki, but I also have the same question that you answered. I have a a fast tremor on my index finger and I can feel a vibration between my thumb and index. I was thinking that was a frib? Very small constant muscle pulsing. I have an appointment a specialist this week. But have the same concern as twin mom
I have also been told anxiety from two drs that wouldn’t even look at my physical symptoms after I passed the strength test. I have indents in my thumb muscle where I can feel the nerve pain?
 
Re: sjtom's thread

Mod note- moved to own thread. Please post any questions you have here, Tom.
 
Tom: "I have a a fast tremor on my index finger and I can feel a vibration between my thumb and index. I was thinking that was a frib? Very small constant muscle pulsing. "

As far as ALS goes, it doesn't matter, Tom. Twitches happen in so many diseases, for so many reasons, that they are diagnostic of nothing.

Tom: "...told anxiety from two drs that wouldn’t even look at my physical symptoms after I passed the strength test. "

Yep. Waste of time.

Let me give a little perspective. You might already know all this, but your posts indicate you don't, so here goes:

ALS is a brain disease. It is not a muscle disease. The disease is in a person's brain. Specifically, it's in amongst the motor nerves which control movement of the voluntary muscles. Not any other nerves, just the motor nerves. Just for the voluntary system.

The disease booger, a really little booger (since no one has captured one for display yet), eats away at those nerves, one by one, in serial order. Typically, the booger destroys the nerves in the brain starting with those which would tell the hand muscles to contract. (Sometimes it'll start with the foot, rarely the tongue, but usually it starts with the nerves that control one of the hand muscles, on just one of the hands.)

Since that hand nerve is destroyed, it can't send the 'go' signal to tell the hand muscle to move. So that muscle doesn't move. It is weak, for sure. Then the booger moves on to the next nerve, which controls other muscles nearby. Then the next... Eventually, your whole arm is flaccid, limp, useless. Paralyzed. This can take a couple months or even a couple years.

Note that there is no pain, no feeling of numbness, no "strange" feeling. The arm feels fine. It "should" move on command. It Just. Doesn't. Go. And there is no feeling, no clue why it won't.

All that other stuff you're writing about buzzing, grooves, loose skin, dents, pain, burning, pulsing, foot arches, and ... EVERYTHING you've written, has absolutely nothing to do with ALS. A lot of people complain about those kinds of things, but once you have experienced ALS, you would see how it works.

Atrophy? Here's the deal. Other diseases cause atrophy in different ways. But, for ALS, atrophy occurs AFTER the arm has been laying around useless for some weeks or months. The muscles, unused for so long, lose their "muscely" appearance and tone. They go flat and the muscles smooth out. Eventually (years,) they become like Nazi-Concentration-Camp-Survivor thin.

Now, Tom, I'm sure you have tons more questions about every little thing so that you, too, can understand ALS. But there are several really good reasons we don't write a dissertation on the subject here.

If you only knew the people you were getting answers from here.... Read the "Interest" text in the little profile box near their posts. The world's most experienced people in ALS have reviewed your case, answered, and moved on, much like your doctors did.

We don't venture any guesses on what is ailing you--that you be irresponsible of us to do. And there are plenty of websites where people are glad to opine on every possible disease. We don't. But we do all wish you the best of many happy years ahead, and hope your appointments will give you the results you need.

Once more, if it needed to be clearer: You don't have ALS. Any more questions, and I'll be tempted to slap your head.
 
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Thanks for the long reply Mike. I’ll let you know how the appointment goes on Thursday. I hope you are correct and thank you!
 
Hi, my specialist appointment was postponed due to philly being shut down for an eagles parade.
So waiting another 2 weeks.

I have done my research and read all of the helpful info on your site but have one question if you do not mind.

I have thumb atrophy in my opinion. On the palm side of my thumb where I feel there has been muscle loss I have nerve pain.

If I touch my thumb with my other hand there is a strong nerve pain. My thumbs are now both hypermobile in the joint

Is this a symptom or typical in als?

I just wanted to ask, because I am not sure if I should be looking into other types of specialist.

Thanks
 
Please follow your doctor's recommendations. Show your doctor your thumb issues and continue working with your medical caregivers. The folks here have given you all the advice they are able to.
 
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