Spasticity/Clonus really worrying me

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nangel

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Hi everyone,

I’m a 24 year old male and over the past couple of months I’ve been going through a variety of symptoms that led me to believe I had multiple sclerosis. Over the past few months, I would develop twitching in all areas of my body, dull pain in my legs that would be worst in the middle of the night and early hours of the day, dull pain around and behind my eyes, temporary weakness in arms in the middle of the night, and internal tremors. Now these are all observed symptoms and from reading the “Before you post” thread I understand the vast array of other causes for these symptoms. I also understand that it is an infinitesimal chance that I have ALS at 24.
However, my neurologist observed that I have hyperreflexia and clonus in both legs.. I have already had an MRI of my brain and cervical spine, both of which have come back clean. The radiologist and neurologist indicated there are no signs of lesions. He has ruled out MS. I have negative HIV and ANA tests. This raises a red flag to me considering clonus and spasticity are indicative of upper motor neuron lesions. Now for my fasciculations, I’ve noticed that I have them now mainly deep in my left leg — like an electrical current is pulsing for most of the day. I also have noticed fasciculations in my left foot and on my tongue as well. I do get occasional fasciculations elsewhere on my body still, but not to the degree that my left leg experiences. I have not noticed any signs of weakness or stumbling yet. Sometimes when I go on walks I will experience a quick twinge of pain in my calf or knee area, but not enough to where I stop in my tracks or anything. Pretty much each morning after a walk I will feel the dull pain or stiffness in my legs, but will go away after I get up and move around.

From what my neurologist has observed, my test results, the pain I experience daily after walks, and the fasciculations that are primarily in my left leg, does anyone see any sort of red flag for ALS here? I’ve been breaking down this past week at the thought that my life would be cut short by this.. It truly does feel like the walls are closing in and I’m on course for the worst destination.. I told my girlfriend we would grow old together or I would die trying. I just never thought it could possibly be so soon.

Thank you all in advance for any insight.
 

lgelb

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I would ask about a sleep study to rule out RLS/PLMD and related disorders. You can also film your own sleep. There is no reason at all to think of ALS. Dull eye pain is often allergies and so a nasal steroid and/or oral antihistamine may help.

Best,
Laurie
 

nangel

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I’ve perused quite a few posts at this point and have yet to find anyone with similar symptoms.. @ShiftKicker or @Lineker1981 , I see that you both are quite involved in this forum, is there any insight you could give me? Perhaps if this does or doesn’t point towards ALS? Or if there are other conditions/diseases that this sounds like..

As I was writing this, I saw that you posted @lgelb ! Thank you so much, I will look into that immediately. So I shouldn’t be concerned about ALS given my current symptoms?
 

lgelb

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I would not be, at all.
 

affected

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Nothing like ALS.
Please don't ask others who fear ALS to break rules and reply to you here.
I hope your doctors solve this soon, but don't freak out and look for the worst.
 

nangel

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Hi @lgelb and @affected, I wanted to give you both an update on where I stand in my diagnostic journey.

This last weekend I developed more troubling symptoms including stiffness/pain in my feet and legs. In my feet it feels like a sharp pain that borders the outside of my feet. In my legs it feels like a very short burst of pain while walking. In the mornings, I can feel pain leftover from the previous day in my lower quads and hamstrings. Additionally, I began to experience more

It has probably been a month of constant fasciculations in practically the same areas of my legs: the middle-outer side and front of my quadriceps, my lower hamstrings, less so my calves, and vibration-like fasciculations on the bottoms of my feet (primarily the left). These fasciculations can practically be felt at all hours of day or night. They can alternate in muscle fibers or rapidly twitch for a brief interval. I have been prescribed klonopin, which has done an incredible job at temporarily stopping the fasciculations.

Even more troubling, I have noticed a visible difference between the musculature and skin of my left hand compared to my right. When I showed this to my neurologist, he had noticed it but commented that there didn’t look to be atrophy. My left arm is slightly weaker than my right in terms my grip strength (like observing when I squeeze a tennis ball). My left pincer grasp is fairly comparable to my right hand. I believe that while this isn’t perceived weakness (in my head), it might be natural. But the most frightening part of this is that I’m seeing fasciculations in my left arm, but most commonly in the thenar region of my hand. I have noticed that I get fasciculations in other places if my hand as well. Almost none of these fasciculations

Most troubling of all, I’ve begun to experience episodes of shortness of breath that don’t seem to be related to my anxiety/panic attacks. When I experience shortness of breath while laying down, I can see a rhythmic pulse to my stomach. It seems to match my heartbeat, but I don’t completely understand the phenomenon and how it could be interacting with my diaphragm in hinder my breathing.

My neurologist checked my reflexes again yesterday and noticed that my clonus went down to 3 beats, which I understand is a normal range! I had also commented to him how I’d always had brisk reflexes, so these two things put me slightly more at ease on UMN issues.. but the stiffness in the mornings still does concern me. Again, he ruled out MS and when asked about if he’s ruled out ALS he says he hasn’t. He’s not sure yet what it could be without thr

I’m scheduled for an EMG in 5 days and the constant twitching in my legs, moderate twitching in my left hand, spread of muscle pain to my forearms, wrist, and fingers are really scaring me. If I didn’t have this anti-anxiety medication I don’t know if I could’ve mentally made it..

Is there any insight/experience you or anyone could give on whether this is still pointing to or away from ALS?
 

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Nothing you've said makes me more concerned for ALS. At root, you continue with bilateral, diffuse, sporadic twitching, pain, and stiffness that do not characterize ALS onset. Stop back with your EMG report, but I would continue to suggest that your sleep receive some attention. Your nights often have a great influence on your days.
 

nangel

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Thanks so much @lgelb, will do. It has certainly been a sleepless month or two for me, so I’m sure I’ve accumulated a fair share of stress. The klonopin has been a godsend in keeping my anxiety at bay and my leg fasciculations seemingly under control. The palm fasciculations might be persisting, but I’m not sure. In the meantime, do you have any recommendations on posts related to EMGs and/or other commonly diagnoses using EMGs? Thanks again, and I’ll be back in 5 days!
 

affected

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You still are not even close to ALS symptoms, but I can see your anxiety rising.
Maybe you didn't read this carefully?

You see ALS is a disease that starts in the brain, interrupting the signal to the spinal cord, and signals from the spinal cord to the muscles. It is not a disease of the muscles. PALS feel completely normal, none of the things you are reporting, they simply can't do something regardless of feeling like the body part should work.

You need to work closely with your doctors, keep bugging them if you can't control your anxiety over any perceived changes. Remember twitching means nothing.

You need to stay away from here and just return to tell us the outcome of the EMG. DO NOT READ MORE ON THEM. You are fuelling this anxiety and we can't jump in and help you do that, nor be part of it.
 

nangel

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Hi @affected and @lgelb, the EMG came back clean today. I have a couple questions regarding how EMGs work if you wouldn’t mind answering them! My neurologist did a strength test on my fingers, arms, and legs which came back normal. He did note a positive Hoffman’s sign as well as 3 beats of clonus which seemed to decrease with each successive dorsiflexion of my ankle.

When he did the EMG, he did it on my right side despite me mentioning that I was worried about weakness in my left hand. I understand that a clean EMG means no ALS, but to fully understand how the EMG works in picking up signs on MND, would it not matter that the EMG was done on my right side instead of my left?

I’d like to also mention that he tested near my ankle, my calf, my tibialis anterior, my quad, my bicep, forearm, and the back of my neck.
 

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No, the hallmark of ALS is the EMG shows certain abnormalities even in muscles that are not feeling weak. It is common therefore to do an area that the person thinks is fine. It sounds like a pretty complete study.
 

nangel

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Actually @affected and @lgelb, don’t bother with those questions I’ve asked if I don’t have anything to be suspicious about with how the EMG was performed. My neurologist assured me that the EMG would pick up on nervous system abnormalities regardless of the tested side. And for additional reassurement, I’ve read the following article: Normal EMG Means NO ALS even with Neuro Symptoms

Please close this thread. Thank you both so much for what you do and for putting up with the constant barrage of anxious people you all deal with despite your own incredibly tough conditions. Is there any particular, promising charity that I could make a sizable donation to? I cannot thank you all enough for what you do, and I wholeheartedly want to do what I can to expedite ALS research — and I hope that any other anxious DIHALS readers reading this also follow suit in donating to fight this insidious disease.

Incidentally, I began to worry just now that my left arm was shaking/twitching a lot more, but I read that this is a common side effect of the EMG :)

Thank you all again. Truly.
 

affected

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huge congratulations - now if you have fears return, immediately see your doctor for help, but don't return here so that you can move on to a healthy life.
 
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