ALS Symptoms?

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djs5150

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Hi everyone,

I've read through the "Read Before Posting" and still have a few questions and I'm hoping this is the correct place. I've also searched through about a dozen or so posts before posting here.

Quick Symptoms Overview:
Clinical Weakness--None as defined in the "Read Before Posting" post because I have no failure.
Yet, I need clarification on this. Is it possible to experience weakness as a symptom of ALS without failure? The "Read Before Posting" post implied that it's not. Yet, on several ALS websites it doesn't mention "clinical weakness" but does state progressive muscle weakness. I've submitted links at the bottoms of the post with quotes from just two.

Weakness Other--About a year ago (maybe longer) I started having weakness in both knees and elbows. This weakness was definitely intermittent. Some days I would wake up and have no weakness and others I would have intense weakness. A few weeks ago, the weakness became constant. About a week ago the weakness has progressed from my knees up to my thighs and hamstrings and down to my calves and from my elbows to my biceps and triceps. Both arms, both legs. A few days ago I started to feel weakness in my stomach area. As I stated, there's not failure associated with the weakness. However, the best way I can describe it is if I stand on my toes I'm able to do it but I'm shaking. When I walk down stairs I notice that when I plant my foot on the next stair my leg starts shaking. It's like I had a hard workout and my muscles are completely fatigued, yet I haven't worked out. The stomach weakness almost feels like the feeling you get on a roller coaster, just not as intense. In addition, I've noticed that my leg muscles in my calves and thighs get very tight when stationary.

Atrophy--Unknown (Will see a physician)

Hyperreflexia--Unknown (Will see a physician)

Speed and Swallowing Issues--None

Twitching--Twitching started with onset of weakness. After a short walk of a mile or less my buttocks is almost guaranteed to twitch like crazy for about 5 mins. Both sides.

Pain--No pain

Age--39 y/o male

Family History--No ALS that I'm aware of in family history

EMG--Not done

Anxiety--No previous issues here, but I can tell you that wondering if I have ALS has caused some anxiety


"A gradual onset of progressive muscle weakness--which is generally painless--is the most common initial symptoms in ALS." (ALS Symptoms and Diagnosis)

"It generally begins with muscle weakness that spreads and gets worse over time" (Amyotrophic lateral sclerosis (ALS) - Symptoms and causes)



So, mainly what I'm after here is obviously to know if the muscle weakness/muscle fatigue sounds like ALS. And secondly, if someone can clarify clinical weakness vs weakness and if it's possible or normal even to have weakness without failure in ALS.
 

Nikki J

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Your links do not contradict what we say. Feeling weak is different than clinical weakness and yes in ALS it progressses. Multiple muscles are involved in most actions so a failure in one or two will mean those multi action activities are harder. However a function that uses only a couple of muscles is impossible. Hand example - first could not button a shirt, then couldn’t use a nail clipper then couldn’t write, cut food, hold a cup make a fist move hand at all. All failures but progression is clear.

only a doctor can determine if you have any clinical weakness so far you have not described it. Of course even clinical weakness has many causes
 

djs5150

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Hi Nikki,

Thank you for your reponse. Okay, I think I'm understanding a bit more. To clarify, take my example. Am I understanding correctly that it would be unlikely, then, to experience general weakness in the legs, then have that weakness progress to some sort of failure? Because that was my understanding when readings the info from the Mayo Clinic, Cleveland Clinic, ALS.org, etc. Versus what I'm understanding from you is, it would likely start with a failure of some sort and then it would progress from there?
 

Nikki J

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yes. Further ALS starts in one area and then spreads. The experience of limb onset is usually a problem with one foot or hand that gets worse then spreads in that limb before going elsewhere. It isn’t an overall weakness to start. It may spread quickly or slowly but you will find PALS able to say it started in my right hand or left foot or wherever
 

djs5150

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Update

I had a Dr’s visit today and she decided to schedule me for an EMG along with a lot of blood work. My symptoms in my legs have gotten more intense. She had me sit in a chair and lift one leg at a time straight out. Each time my quads started shaking very intensely immediately. They’re obviously weak.

Quick recap: Both legs feel weak (no failure) at the calves, hamstrings, and quads. It very much feels like I had an intense workout and my legs feel like jelly or something. They fatigue VERY easily into shaking.

I won’t be able to see a neurologist for a long while so I am leaning on this forum for answers and support. I will be direct in my questions. I appreciate you Nikki, for the earlier responses. However I need more answers/clarification.


1. While ALS usually presents in one limb, is it possible for it to present this way? Meaning weakness/fatigue in both legs in the exact same spots? Has ANYONE experienced this with ALS!
2. I understand that one day something can jjsy stop working, however, is it possible to also feel weak/fatigue (not clinical weakness) as the weakness progresses to clinical weakness? This is an important question for me.

Thanks in advance for the answers/support.
 

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There is a bilateral flail leg variant but loss of muscle is very objectively evident. As to your second question, did your PCP perceive clinical weakness? That's much more important than trying to parse whatever a feeling of weakness means to you.
 

djs5150

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Thank you for your reply, I will research the bilateral flail leg variant. I have lost 7 lbs in the past two weeks since this started. I’m a small guy to begin with so that part is noticeable.

In re to clinical weakness, the PCP has me squeeze her hands and has me lift my legs while putting resistance on my feet. She said I was strong.

In re to my feelings of weakness. I understand that clinical weakness is much more important. But, I don’t think the feeling I’m describing is vague. I suspect most people know the exact feeling I’m referring to after a vigorous workout. Legs feel sort of likelike jelly/jello. What’s more is they vigorously shake when doing the simplest thing like raising my leg up as described.

Also, I forgot to mention this but I am experiencing twitching in both legs as well. Just more info to add.
 

Nikki J

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Since op is reporting feelings of weakness in arms and stomach this doesn’t sound like flail leg
 

lgelb

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To be clearer, with the flail leg variant, your legs become like sticks. I mentioned it for completeness, not because I think you have it. As Nikki says, what you describe doesn't sound like flail leg otherwise, either.
 
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djs5150

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The weakness in my arms and stomach went away the same day that I originally posted. That could have been anxiety due to the leg weakness I suppose. Not sure if that changes anything about what you or anyone is thinking this could be. I'm really hoping this isn't ALS. My HCP fast-tracked me into neurology for Tuesday. I have an EKG already scheduled for the 19th. Has anyone ever felt this weakness, fatigue, and/or literal muscle shaking when engaging that muscle as part of their ALS symptoms? I understand the hallmark symptoms, especially clinical weakness, however, I can't help but wonder if these symptoms can also be related to ALS. Thanks for all the help.
 

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Hi there-

I think you have identified one of your biggest issues- which is anxiety about ALS. Nothing anyone has said here has provided you relief from that anxiety though. I hope your doctor's appointment will provide you with more information and also reassure you in a way we haven't been able to. We understand how waiting can be stressful, but engaging on a forum for those with ALS will only add to that stress, despite your trying to seek reassurance here.

Please let us know how your appointment went- it's always nice when people return to let us know the outcome of their neurology appointments. There are lots of conditions (see the "Read Before" link for a partial list) that can cause some of the issues you have reported feeling, and your doctors will be able to help you sort out what is of concern (if anything) and what may be exacerbated/caused by anxiety.
 

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Truly, read this post carefully and work on your anxiety.

ALS just doesn't do what you are describing.
 

djs5150

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Thank you for the responses. While I agree that I am anxious about having ALS, I wouldn't say I need to "work on my anxiety." It's quite normal for someone experiencing symptoms for which they have no answer to be concerned. It does look like quite a few folks come here from what looks to be like health anxiety so I can see why that advice is routinely given. I brought up anxiety because I don't know what else to attribute the stomach and arm weakness that I had to. It's my best guess. I'll take a look at the other conditions now.

I will certainly provide an update from my neurology appointment on Tuesday. Also, please forgive me, I wrote "EKG" above when I meant EMG. I'll provide updates for that as well.

Thanks again for all the responses.
 

ShiftKicker

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I should note that a recommendation to find anxiety support is not a dismissal of symptoms, but something to do while you also work with your doctors to address your physical symptoms. Everyone deserves support, however this forum is not the place to provide it- the members here are not qualified and can not provide the same quality support a trained professional can.
 

djs5150

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Update

Neurology Appointment 07/12
I was able to see a neurologist as planned. He did a standard neurology assessment on me. He did find that one of my legs were a little more brisk in my reflexes, but stated that sometimes people with similar builds as mine (I currently weight around 133lbs) have this. He also tested the strength of my legs while I was lying down by asking me to raise them while he put pressure. He said my strength was a 10/10. Overall, he stated that he wasn't overly concerned that I have ALS, but wanted to see the results of my EMG. He also put in a lab order to test my B12 which came back in range. My PCP also ordered labs to rule out other things too. Lab results below

EMG Appointment 07/21
She completed the EMG on one side of my body only, perhaps this is normal. She did ask which side I preferred and I told her my left. She pretty much went all the way up my legs, up to my back, and then finished with my arms. It was a little frustrating because I asked for some clarification on the signs of ALS (same thing I've been asking here) and she told me that I was a nursing student and it was best if I just looked it up. I wish I was kidding. My wife and I just looked at each other puzzled. Obviously, that made me a little uneasy regarding her ability to interpret the results. Anyway, I'll copy what she put in the report here because perhaps others will be better equipped to interpret or know better than I what it's saying. Please note, I'm not asking anyone to play Dr and interpret my EMG results, however, if you see anything on there that looks familiar or that points towards or away from ALS, that would be super helpful to me. I do have a follow up with the neurologist at the end of this month.

EMG Report
Reflexes 2+ all over
No spasticity
Hoffman's sign negative
Plantars withdrawal

No definite atrophy noted, but appears some generalized the low muscle mass in general, possibly because of thin built
No definite muscle tenderness

CPK 87
ANA negative

Study is done on left upper and lower limb

Left superficial peroneal sensory peak latency 2.19, peak amplitude 21.5 velocity 50
Right superficial peroneal sensory peak latency 2.29, peak amplitude 37.6, velocity 88
Left sural sensory peak latency 3.27, peak amplitude 31.9, velocity 54
Left ulnar sensory peak latency 2.73, peak amplitude 36.3, velocity 72
Left median sensory peak latency 3.6, peak amplitude 52 point 1, velocity 53
Left radial sensory peak latency 2, peak amplitude 57.7, velocity 50

Motor study
Left common peroneal ED B motor latency 5.23, distal amplitude 3.8, amplitude at knee stimulation 3.7, velocity 43
Left tibial distal motor latency 3.5, distal amplitude 16.4, amplitude at knee stimulation 13.8, with velocity 44
Left median distal motor latency 2.79, distal amplitude 8.6, amplitude at elbow stimulation 8.3, with velocity 54
Left ulnar distal motor latency 2.6, distal amplitude 13.5, amplitude below elbow stimulation 2.4, above elbow stimulation 13.6, at axilla 12.9, with velocity 61, 78, 61 respectively
No definite conduction block noted
No definite temporal dispersion

F response of left common peroneal ED B 51.1, left tibial 48.3, left median 27, left ulnar 28.4

Needle EMG was done on left the tibialis anterior, tibialis posterior, medial gastrocs, peroneus longus, vastus lateralis, vastus medialis, lower lumbosacral paraspinals on the left side

Needle EMG was also done on the left APB, FDI, FCR, FCU, extensor indicis proprius, biceps, triceps, deltoid, lower cervical paraspinals on the left side.

Left mid thoracic paraspinals falls also checked

There were no fibrillation potential noticed in any of the muscles Checked
There were no fasciculation potential noticed
No definite myopathy potential
Motor units were grossly unremarkable

Patient tolerated the procedure without any complication

Interpretation
The study is grossly unremarkable except for mild carpal tunnel syndrome/median neuropathy at the left wrist

No evidence of left cervical radiculopathy or left lumbosacral radiculopathy

No definite evidence of motor neuron neuron disease at this point

If any clinical symptoms concerning for ALS occurs in future, do further workup and suggest to repeat the study in future .


After EMG/New Symptoms
About two days after the EMG, my body started to twitch more than it had before. Today is the absolute worst that it has been. I am twitching more than I am not. The twitching is 80-90% in both legs (thighs, calves). However, I am also twitching in my hands, feet, both sides of my jaw, biceps, back, and shoulder. A few days ago I had twitching in my upper right shoulder that lasted for hours at a time. Usually the twitches only last one or two movements, then a break, then one or two movements somewhere else (could be in the same leg, could be other leg, could be somewhere completely different could be the exact same spot, it's random it seems). I should also mention, it seems that the twitching goes away when I'm moving my body, but comes right back when I'm stationary. In fact, the more I move the more twitching I have after.
In the EMG report she wrote "There were no fasciculation potential noticed." You can literally look at me and see them now.


Symptoms
Legs feel constantly "weak." I believe fatigued is a much better description of how they feel. They do feel weak to be sure, but it feels like they've had a hard workout even though they have not. Very much like Jell-O or something. At times, my legs have the same feeling that one would get in their stomach when on a rollercoaster except it's in my legs. I know that's an interesting description, but sometimes they feel like that.
I do not think I have lost any strength, but, I am concerned that this could be the start of more symptoms which will eventually lead to clinical weakness and not being able to do certain things with my leg(s).
Thighs shake vigorously while going into a squatting position
Thighs shake viciously while lifting leg straight up while laying down
Intense twitching -- both legs (thighs, calves), feet, hand, both sides of my jaw, temple area, biceps, and various other places. Seems to stop when I'm moving my body. Comes back as soon as I stop
The other night my upper back shoulder twitched for hours.

Labs
EMG
B12 -- normal
Aldolase -- normal
Creatine Kinase -- normal
Vit D -- normal
TSH -- normal
Anti-Nuclear Ab (ANA), IgG -- none detected
Cyclic Citrullinated Peptide Ab, IgG -- normal
C-Reactive Protein (CRP) -- normal
Rheumatoid Factor -- normal
Sedimentation Rate, Erythrocyte -- normal
Acetylcholine Binding Antibody -- normal


Concerns and Questions
1. My leg fatigue/weakness.

In his explanation of the difference between muscle pain and tremors, Dr. Edward Kasarkis explains that those with ALS "use the term tremor when they are actually having muscle failure." He goes on to say "When people push their muscles to the limit, they can see their muscles react. It can look like a tremor because the muscle cannot generate any more force You see this phenomenon every four years in the Olympic power weight lifting event as the contestants reach the limit of their muscle strength. For people with ALS, reaching that limit may not seem to take a lot of effort. For example, just raising your wrist up from a table top against gravity can be challenging, and the muscles response may look like a tremor because the action cannot be sustained."

(charity site link removed- see posting ToS)

The above statement seems like it could be exactly what I'm experiencing when I try and do simple things like squat or lift my legs straight up while lying down. Or even stand. My muscles feel like they are at their limit much quicker than usual. For example, raising my leg while lying down. Or, the fact that standing makes my legs feel weak. Yet, on this forum, it seems the consensus is that it's not about feeling it's about not being able to do. Can I get some clarification here? Again it appears that my muscles are reaching their limits without doing too much. It seems to me, and I'm very happy to be wrong here, that since it's a progressive disease that one would feel weaker and weaker. Am I incorrect here?



2. Given this new onset of intense twitching, is it possible that the results from the EMG would look different now? Meaning is it possible that it was too early to diagnose?


Thank you for taking the time to read and respond.
 
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