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Frobert

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Hello, everyone. I was just wondering if I would be able to get some feedback and opinions from the wonderful people on this forum. I realize you guys get a lot of questions regarding things don't seem to be related to ALS, so I apologize in advance if I go down the same path.

First of all, I should note that I'm a 32 y/o male with terrible posture. Back in October 2018, I started getting a tight feeling in my left leg. My quad and calf seemed to get tight every once in a while and my left big toe would feel numb sometimes when I slept. I was also starting to experience some burning sensations in my hands when my upper body would tighten up (this would typically happen after being on my phone or laptop a lot). That burning would come and go for maybe a month but I haven't gotten that probably since late December.

Around that same time in December, I started to feel a buzzing sensation in my left ankle that would come and go. I eventually started feeling it throughout my left foot and then started feeling it a little in my right foot about a month ago. I wouldn't say it felt like twitching because I would study my foot and not see any movement in the muscles. I went to physical therapy for a 4 weeks and that didn't seem to solve the buzzing.

Fast forward to yesterday when I had my first appointment with a neurologist. He tested all of my reflexes and noted that they were all brisk. I could have sworn I saw clonus in both ankles but he didn't mention it. He said more investigation was needed so he order some blood tests. He said it could be something or it could be nothing. I brought up ALS and he said since it's rare it shouldn't be on the table yet....but it's possible.

Long story short: I haven't noticed any weakness yet. No trouble walking, no trouble walking on toes or heels, no problems doing anything with my hands (other than occasional fatigue from being on computer for a long time). Should I be concerned that all of my reflexes were brisk and might have seen clonus? I know I have bad anxiety and my pulse was 113 during the appt. so I'm not sure if that might have contributed.

I'm sorry for the long post and I'd appreciate any feedback I could get.

Thanks!
 

ShiftKicker

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Have a look here: https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html to reassure yourself about things like buzzing, burning, numbness, tingling, etc.

If a neuro does not detect clonus, you do not have clonus. This is not a thing you can really test or assess yourself for- just like self testing for reflexes.

There are so many things that can cause the symptoms you are reporting, but ALS is not associated with these things.
 

Frobert

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Thank you for the quick reply, ShiftKicker. I really do appreciate all of the help you guys give.

I forgot to mention that my left foot cramped up twice on Saturday. The long muscle that is on the inside of the foot that goes from the ankle to the big toe. Ever since it cramped up, I get a constant tingling right by the area it meets the big toe.

I've also noticed that there seems to be pronation on this left foot. I put more pressure on the outside of the foot when I'm standing and walking and that is making my feet sore in multiple places. Does pronation ever occur as a result of ALS weakening certain muscles?

I definitely appreciate the "READ BEFORE..." post. On my post-visit summary, the neuro wrote that "Hyperreflexia" was addressed. I guess I'm worried he noted clonus but just grouped it in with hyperreflexia. I asked about the chances of ALS and he said, "Greater than zero but less than 100." I know it could be a lot of things, but wouldn't he have told me it didn't seem like ALS?

The sticky post also noted that Hyperreflexia is a major early symptom of ALS. So the fact that the neuro noted it has me worried.
 
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Nikki J

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The sticky should not have said that and no longer does. Thank you for pointing it out . Hyperreflexia is very common especially in the anxious. The sticky also notes bilateral which you had by your report was especially non concerning. Clonus would NOT be grouped with hyper reflexia by a neuro
 
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Frobert

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Thanks again for the responses. You guys do great work and I know it must be frustrating to deal with similar questions over and over again.

One final question for anyone...is it rare for ALS to spread from limb to limb without noticing any weakness? In other words, does it typically progress in a typical pattern and would a person recognize weakness in a limb before the disease spread throughout the body?
 

lgelb

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Yes and yes. ALS manifests as inability to do something you used to do easily, not feelings, not twitching, not buzzing, not pain. And that holds true whether a few or many muscles are affected.
 

Frobert

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So I got another cramp in the same foot last night moving around in bed. This time it was in the muscle on the outer edge of the foot (the one that has been sore because my foot supination has been putting more pressure on it). Obviously I started to freak out a little because this same foot cramped up last weekend. I've read so many contradicting claims regarding cramps and ALS. Some say cramps aren't typically an early symptom while others say they are.

Is it normal for the same foot to cramp again? Can anxiety or putting too much pressure on the muscles in the foot cause these cramps?
 

Clearwater AL

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Frobert, freaking out over a cramp is feeding your anxiety.

As you wrote above...

"Can anxiety or putting too much pressure on the muscles in the foot cause these cramps.

Direct answer: Yes.

Cramps are a very insignificant indicator of ALS. Nearly everybody gets cramps
and often in the same place.

This may be debated by some. Generally cramps are related to tendons.
Charlie Horses are related to muscles. Tendons really aren't in the ALS picture.

Calm down... read more about anxiety and much less concerning ALS.
 

Frobert

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Thank you, Clearwater. As always, your feedback is greatly appreciated and means a lot. I definitely have some anxiety issues to deal with!
 

Kristina1

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I had to read your post twice because I thought I must have missed the part where you list concerning symptoms. Aside from brisk reflexes, nothing you wrote is related to als. I would not be concerned at all. You have no weakness, therefore there is no als.

I asked about the chances of ALS and he said, "Greater than zero but less than 100. Sounds like your neuro has that particular dry sense of humor a lot of neurologists have- im betting it was delivered dead pan and everything lol. It doesn't mean he thinks you might have it.
 

Lkaibel

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An aside: my reflexes are fire drill brisk, no ALS. Some people just have that said the Doctor....

Next, no weakness? Why are you here?
 

Frobert

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I don't have any weakness in that I can walk on my toes and heels, and do things like jump up the stairs or jump from the floor onto the bed. But, in my mind, I wonder if weakness could be presenting itself in the muscles of my foot that are making the muscles in the rest of my leg work harder and therefore get tight and sore. So I convince myself that the supination in my left foot is being caused by the muscle on the inside of my foot getting weak. I also sometimes wonder if the "buzzing" I'm feeling is actually fasiculations of the inner muscles.

I know some of this might sound crazy. But could ALS ever present itself in this way?
 

KarenNWendyn

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No ALS does not present that way.

There are so many other things that cause tight sore muscles and buzzing. The most common would be a mechanical musculoskeletal issue.

I practiced rheumatology for over 25 years, and never once did I see a case of tight sore muscles as the presenting symptoms of ALS.

If you don’t have failure of muscle function, you don’t have ALS.
 

ShiftKicker

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Please understand the people here who have answered you already come to this forum to receive support for their own diagnosed ALS or because they are caring for a loved one with ALS. I request you read https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html again, paying special attention to the last 2 sections.

This really isn't a place to continue satisfying curiosity or insisting people continue to answer increasingly focused questions because you simply can't believe the multiple answers and reassurances you've already received. If you are unable to leave ALS behind, please go back to your doctor and address your symptoms and anxiety about those symptoms with your doctor.

Thread closed. Please do not open another unless an EMG indicates ALS or your neurologist officially tells you there is a strong possibility of MND. They have not done so at this time.
 
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