Help me please

Sam1223

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Hello

i need advice.

3 months ago I woke up at night with cramps like charley horses in my left thigh. the following days I started to have a feeling of weakness in the thigh which gradually descended in my calf. When I stand for a long time my calf contracts. The fasciculations only first appeared in my thighs and calf for two weeks but now the fasciculations are all over my body. I had a lumbar MRI which showed nothing in order to find a reason for this weakness. my neuro tells me that my strengths are equal on each side of the body and I have normal brist reflexes on each side. she gave me an emg very quickly in my left leg and the only thing indicated is: no denervation in the 5 muscles observed. i only worry about having fasciculations since i feel this weakness in my leg. I also feel like my right arm is also losing strength. Am I right in thinking that this looks like a start to als?
 

Sam1223

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Can i need a second opinion? Neuro seems to not taking me serioulsy because of my age. Weakness and fasc are not commun to a lot of disease
 

ShiftKicker

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Sam, I'd seriously ask yourself whether you'd believe another doctor or not as you did not even believe the one that conducted an emg that showed nothing. You are so focused on ALS that you may not be allowing yourself to hear what other reasons you may be experiencing symptoms from. Please work with your doctor to track those reasons down. This forum is not the place for you unless a doctor indicates there is cause for concern of ALS, not a place to go searching for reasons why you think you have it.
 

lgelb

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As you say, evidently the doctor did not pick up clinical weakness in your leg since you speak of a "feeling" of weakness. Therefore, your statement that few conditions cause weakness and fascics is both irrelevant and untrue, and presents no reason to seek a second opinion, though that is always your right (please stay safe). You can also ask that your arm strength be baselined if it hasn't been, so that any changes can be tracked.

It might be time to reconsider your seated and standing work positions, and your sleep surfaces (pillow, mattress, overlay) as well as the room temperature, keeping filters clean, etc. Waking up with leg pain certainly suggests that your sleep positioning might play a role. You can also ask about screening for RLS/PLMD, and even video your own sleep as part of your initial factfinding.

You seem to be equating "taking you seriously" with seeing ALS. On the contrary, it's hard for a doc to take you seriously when you are focused on one disease. Their job is to find and treat what's real and matters, not to reinforce your beliefs.

Best,
Laurie
 

Sam1223

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last quick question i have a feeling of heartbeat / vibration in my hands and under my feet, can you feel the fibrillations (those found during an emg). thank you
 

Nikki J

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No you can not
 

Clearwater AL

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(With the Threads that follow below this one it was difficult
to which one to post it on. Ok, for the readers of this
sub-forum. Probably applicable....)

During a pandemic, a person may notice very common every day
physical sensations normally overlooked, often not even noticed,
but now becomes the fuel for health anxiety.

The Centers for Disease Control and Prevention (CDC) note that
some people often find the current pandemic stressful and experience
anxiety.

The National Alliance on Mental Health suggest that most people with
health anxiety will experience one or more of the following symptoms:

Fasciculation (twitches).
Shortness of breath or a feeling of choking, difficulty swallowing.
Shaky limbs, weakness.
Tingling in the fingers, limbs.
Numbness, muscle ache.
Irregular heart beat.
Panic attacks.

Then it’s off to Dr. Google… now their anxiety gets fuel injected and
unfortunately for some it becomes supercharged.

Sadly it seems, Dr. Google has a fixation for ALS… failing to refer
that it is a rare disease. COVID 19 anxiety can also generate a sense of
doom turning the searcher’s direction to terminal ALS.

A old term gaining new popularity lately... "down a rabbit hole."
 
Last edited:

Sam1223

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i agree with you that the covid period does not help anxious people but my symptoms started when I was feeling well. Soon 4 months and I have more and more difficulty walking I feel that I must put more effort to walk well and my leg hurts my calf like a feeling of pulling up to the foot not to mention the fasciculations and cramps which are concentrated only in this leg and at times some fasciculation in the other leg If I do not have a hernis or vertebral collapse according to my mri only mild osteoarthritis why I feel my leg weakening . My doctor doesn't know what to do.
 

Clearwater AL

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Sam, as you wrote...

"I agree with you that the covid period does not help anxious people
but my symptoms started when I was feeling well."

Your anxiety may have subconsciously began when you were feeling well.

(Existing in the mind but not immediately available to consciousness,
being mental activities just below the threshold of consciousness.)

You've had an MRI and an EMG (5 muscles). No ALS.
Health Anxiety? Most likely. Something else... your anxiety is making it
hard for your doctor.... "My doctor doesn't know what to do."

Address health anxiety with your doctor...
 

Sam1223

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i never talk to my neurologist or GP as i had fears about the als. I know it's very rare at my age but here in Canada on the als site the first symptoms listed are: (from a reliable site in French and in the first symptoms they talk about Sensation of weakness)

Spinal shape
In this form of ALS, the disease usually starts with a feeling of weakness in part of a limb, accompanied by small involuntary twitching or twitching (fasciculations). Added to these contractions are cramps, painful contractures and a feeling of stiffness (or ankylosis) in the joints and limbs. The movements then become more and more difficult. The first symptoms include difficulty in coordinating movements, lack of precision in certain gestures (for example, involuntarily dropping an object), discomfort when walking, balance problems and / or falls. These disorders gradually get worse and are associated with a feeling of general fatigue. Eventually all limbs are affected, but asymmetrically (one side is more affected than the other). Muscle wasting (amyotrophy) occurs more or less quickly.
 

Sam1223

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new symptom for 1 week. i have pain in my jaw muscles after eating and during the day it hurts, it's tense and in my right ear (on the same side as my leg which has problems) my tympam often jumps/ spams like a click sound. Is this common / could be related to als?
 

Bestfriends14

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No. Take good care and good luck to you. Any further questions are to be directed to your GP and not on this site, which is for those with ALS, their caregivers, or those getting an ALS diagnosis. You are none of these.

Good luck to you and stay safe.
 
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