ALS Symptoms

[panic 16]

I am a 37 y/o female who has severe anxiety about ALS. Started out as numbness in hands and arms. Then burning sensations in the arms and loss of dexterity now and then in my right hand.

Saw a first neuro, and she suggested MS. Did an MRI and a spinal tap - MRI showed moderate stenosis at c-4/c-5 diffuse to disc bulge. Went to a second neuro and did a nerve conduction study. motor nerves looked great, she said. Only issues were ulnar nerve compression in both arms.

Went to a neurosurgeon, had a lower spine MRI. Have stenosis because of a herniated disc in S1/L5 there also. He did a quick clinical weakness test ... passed it with no issues.

Have fasciculations all over, but primarily in my knee. Some atrophy I think (no one else does or chalks it up to me always looking like that but just not noticing it due to anxiety). My physical therapist measured my leg and compared it to the other and the "bad" one is actually bigger! She also said atrophy doesn't hit a muscle a tiny bit at a time ... the whole muscle looks smaller. Mine is just an indentation in one small spot.

My left leg gave out on me one night but saw my neuro the next day and she did another clinical weakness test ... i passed with flying colors. She said she thinks I have conversion disorder where my stress manifests as neurological issues even though I don't have reasons for some of my ailments.

I cannot move on with my life for fear of ALS, so I begged my neuro for the needle EMG. She said I didn't need it whatsoever, but she's doing it this Wed. I am so afraid I am dying ... I don't have clinical weakness but feel I can't walk well and am walking through mud half the time.

Any insight?

[Sparkling_Fairy]

This is a great post another member panic 16, posted on this forum. It describes what actually happens really well, versus what you feel and how it's not ALS.

If you don't have any clinical weakness, it's not ALS.

Symptoms

The major initial symptoms of ALS are clinical weakness, atrophy and hyperreflexia. Some people may have slurred speech.

Clinical Weakness—ALS is about failing, not feeling.

ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness. It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work

Atrophy

Atrophy, or muscle wasting, is a frequent early symptom of ALS, but it is best judged by your PCP (primary care physician) or neurologist. If you are trying to judge it yourself, the atrophy must show a measurable difference between left and right sides, or between today and past measurements taken in the same manner (and hopefully by the same person). But remember, no human body is perfectly symmetrical and small differences are normal. Dents, dimples and other indentations in a muscle surface are common and generally meaningless.

Hyperreflexia

Hyperreflexia, or overactive reflexes, cannot be judged by you. This determination must be made by your PCP or neurologist. Slightly overactive reflexes are not uncommon and, especially if they are bilateral, may be meaningless.

Speech and swallowing issues

Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign! Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop!
Twitching

If you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes If you have twitching without clinical weakness, atrophy or hyperreflexia, your twitching is probably not from ALS, which is a very, very rare disease.
"I asked her about contradictory information about fasics being a precursor of MND. Here is her answer 1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes. 2. Fasics themselves are no real indicator of MND or any other disease. 3. In most cases, fasics are of benign origin.4. I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice. 5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notices them."

Pain

If you have pain, aches, tingling, soreness, etc., these point away from ALS. ALS is a disease of the motor nerves, not the sensory nerves. There can be pain in ALS, but it is almost always well into the disease process, when the muscles can no longer hold the joints together or when immobility has caused frozen joints, bedsores, etc.
Other Issues

Anxiety

Anxiety can be a real problem that can endanger your physical health. It is a self-fueling fire—the more anxious you become, the more twitches you will have, the more you obsess with perceived weakness in your arm or leg or hand, the more dents you will find… and the more you will become convinced you have atrophy. If you can’t stop using the internet to diagnose your problems, or if you cannot stay away from this site, that should tell you something important about your mental health.
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[panic 16]

Thank you. I am just so afraid. Afraid of dying from this awful disease. It's taken over my life, the fear of it.

[Josh1234]

You need a psychologist and/or medication, not an EMG. You've been cleared by several people and won't listen to them. You need mental help, not neurological. The EMG will make you feel ok for a few weeks and you'll be back to worrying. If they find some denervation or moderate (yet normal) neuronic damage, you're gon a lose your mind. I would cancel your EMG if it's not too late.

[NancyW]

Thank you. I am just so afraid. Afraid of dying from this awful disease. It's taken over my life, the fear of it.

Did you even read the post sparkling fairy posted? I feel like you passed it right by.

I know 3 people with ALS, one of them died last week.

Neither had time to worry about having ALS, they had severe symptoms and we're diagnosed fairly quickly. I highly doubt you're doing this roundie round with your drs and tests and they are missing an ALS diagnosis.

[Fishmanpa]

As stated... No way... Having experience in real life illnesses, I can unequivocally state this is anxiety.

Please seek help with your real illness.... anxiety.

Positive thoughts

[BrightPhoenix]

Just wondering how you're doing OP. I'm 32 and I have fears too as I've suddenly started having muscle fatigue and weakness (perceived weakness) even though I can still do everything normally. Still can button my shirt, still can lift, but the muscles just get fatigued faster.

Are you doing OK OP?