ALS creeping up?

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New member
Dec 25, 2022
Learn about ALS
Hello everyone. I am here writing this because the title of this thread alone describes my situation. I’m a 25yo male who has been diagnosed so far with Functional Neurological Disorder and Benign Fasciculation Syndrome and still have the fear of potentially having ALS. My symptoms began this way:
In 2017, i’ve noticed I had trouble lifting objects that I usually did not have and things would slip out of my hands easily. I would ocassionally have to stop writing as my dominant hand (right) would cramp easily. I felt a lot weaker and also had trouble with my right leg as it would fatigue easily and had pain when lifting up my foot. Also felt a tickling sensation on right bicep, left forearm, and right leg.
In 2018, my calves would cramp for no reason. I drank lots of water. Both my hands and weakness on both my right leg and right arm was progressing. However the right side was worse and felt I had to limp sometimes with pain and discomfort on right butt talk. I began to have sharp lower back pain mid 2018. I also began to slur and my tongue was fatiguing after eating meals.
2019: my low back pain got worse, my grip and strength became weaker in all areas I previously described. This is where things get weird:
I began to have frequent and urgency when it came to urination and abdominal pain. My extremities felt freezing cold but were normal in temperature when touched. Following this my legs began to feel a lot weaker and my slurring and eating became much weaker. I began to have painful headaches as well. In April 2019, I remember the whole right side from my head down to the right side of my foot went numb and began to have excessive chills for a few minutes. Weirdest feeling. No more frequent urination but now have trouble defecating.
May 2019: Normal Mri of whole spine and brain, and an emg was performed and it came out normal. However, the fasciculations started after the EMG.
July 2019: New neurologist repeat EMG throughout whole body and it came out clean/normal. Referred to UCLA Neuromuscular Department.
Skip to 2020: symptoms: Over emotional laughter & crying, brain fog, fasciculations throughout whole body, sudden numbness tingling in all extremities at random but all mostly affecting right side, constipation, slurring and trouble swallowing. Weakness progressed in all affected areas. Lifting my right foot after work outs or long walks began to become very difficult.
April 2020: EMG performed only on right side and right side of lower spine. Came out clean/normal.
2021: All symptoms present and progressed, however, I began to notice atrophy and dents on my right butt muscle and right calf muscle. My neuromuscular Dr. examined my right calf dent and says he believes its congenital. In August 2021, I was seen by a neurologist at Cedar Sinai to examine the right buttock muscle and he said it looked normal. Even the Head of the neuromuscular and ALS clinic walked in and said the same. I told them about my symptoms, but what was worse during the time was my low back pain, right arm weakness, grip on both hands, and right leg weakness. However, in the clinical exam, because I passed it and was able to walk on my toes and heels I’m fine. I tried to explain that I can pass these test but if it went on a few seconds longer my shin would give out and finger strength would give out as well as my right knee when lifting my leg. They told me they agree with BFS and Functional Neurological Disorder.
2022: My joints in my feet, ankles and wrist crack constantly non stop with any movement. My low back pain is sharper than ever, my tongue and jaw fatigue far easily, and my right leg is losing movement. My right arm bicep tickles and looks atrophied in comparison to my left. Fasciculations are wide spread still and constant. Grip is more poor especially on left hand. I get random chills on certain parts of my body including parts of my face. Can’t smile much especially on the right side of my face. I noticed the inner thigh muscle on my right leg is nearly gone. My left forearm and wrist are thinner than my right.
Dec 2022: Met with my neuromuscular neurologist from UCLA again. I told him all my symptoms are there still and have progressed. However the main issue i wanted to get to him was my right leg and sharp low back pain that doesn’t go away. Examined and noted:
- Difficult motor control on right leg and slight give away. MRI of spine required to rule out demyelinating diseases. No evidence of ALS or mimic disease. Follow up EMG January 2023. However, my neurologist also described this as a peace of mind therapeutic EMG as my neurologist doesn’t believe it’s ALS.
I’m very scared as I have read many instances of ALS being diagnosed with a clean EMG prior even multiple but later on getting the dirty EMG and ALS diagnosis later. My 2020 EMG, Someone doing their fellowship performed the EMG with my neuromuscular Dr. directing them. Could they have skipped the spots that was important? I said i have trouble lifting my foot, but they did skip Perennial nerve/muscle. Should ALS have shown up already? Was it done poorly? I’m frightened and don’t look forward to my emg next year. Was also notified that another neuromuscular neurologist at another ALS clinic is willing to review my case. I’m nervous/scared.
Whatever you have read I don't see how much more you can be assured by neuromuscular specialists over a 5 year period that you do not have ALS. There truly ain't nothing we can say if you don't believe them, nor our READ BEFORE POSTING sticky that tells you that the EMG can't be done too early. Like 5 years too early?
You still even have full function.
Let us know the result, but honestly, there is not a single thing we can say against all you have been told.
Please AMEND your profile - to Learn about ALS and remove the diagnosis date. It is very misleading.
Hello there-

The folk here would not disagree with the conclusions the specialists you've seen have come to. FND is a very real and disabling condition. I heartily encourage you to access the FND support/discussion groups on either FB or reddit to find a community that will absolutely be able to provide you peer support and information outside of what your doctors can provide.

Your EMG in January will hopefully provide further reassurance. ALS has some signature findings on an EMG, and when they don't show, it means there is some other reason for your symptoms.

Take care
Best of luck with your EMG.
I finished my EMG, and my neuromuscular neurologist said it came back normal. A couple things that worried me during the EMG was when he tested my right calf muscle, it did not activate at all. No sound or nothing; it was tested with me laying on my back and pushing my foot down against his hand and my muscle couldn’t activate. He repositioned the needle multiple times and nothing. But then he told me to bend my knee and lift my foot, then it finally activated normal. Should i be worried? The second thing that worried me was he tested me left arm but not my whole arm. Just above my elbow when I have been feeling numbness and tingling as well as fasiculations on my upper forearm and wrist area with trouble using my index and thumb finger. I feel the bone in my index finger more exposed when feeling it but he didnt care to feel it because at sight it looks normal. When i press them together i feel a uncomfortable sensation like a tendon bone or something is going to pop out of my upper palm. He did test the muscle between my index finger and thumb and it came back normal. Dexterity and motor control is lose in both my thumb and index finger. I asked why he did not do it and he said adequate testing was done.
I don't think the people here would contradict the person trained to conduct EMGs. They tested all the sites necessary to clear you of what you fear. It's very common for people who struggle with an overwhelming fear of ALS to second guess those who spent years studying to become specialists. That is not a logical thing to do, and you must confront that type of thought and figure out how to overcome it.

It's really not the function of people here to reassure you over and over and to contradict specialists- especially after you've been cleared of ALS. If you still have questions, your neurologist is the person you must ask. We celebrate your being cleared of ALS and hope you are able to move on from this forum.

Please take care
Normal EMG - that is fantastic news!

Definitely if you still can't get past your concerns, sit down and go through the test and your concerns with your doctor as he can examine you again and discuss in full context. All the best.
Hello everyone. I know this is a serious condition and by no means I don’t mean to seem as if I am teasing around it in any way. I had seen my neuromuscular neurologist and he clinically noted there is give away on my lift wrist as well as my right foot with dorsiflexion, as well as brisk reflex on my right knee. One thing I had written in my journal that I forgot to mention to my neurologist before was I had a time where I was getting a tingling ticklish sensation that was below my foot and went into the right butt cheek as well which occurred a year ago. Very uncomfortable and didn’t go away even with a massage it felt ticklish its hard to explain. It began to spread to my left leg as well and occurred on the left butt cheek last week. Now i have this ongoing sensation of having super cold feet but feel warm to the touch. No matter if i use warm water or massage them. I’ve read posts where people said they felt these things for years prior before being diagnosed. My hometown neurologist(not neuromuscular) said things could just be starting but he doesn’t believe so but did mentioned after 5 yrs one could should be clear. I’m alittle worried the real things are now beginning as i can’t move my left hand the same anymore and my right leg as they progressively continue to get worse as if they’re failing.
I'd ask about screening for Restless Leg Syndrome (the ticklish feeling might fit in there). But I'm closing this thread because you've answered all your own questions. Please do not start another.

Five years in, what you describe isn't ALS, and the normal EMG confirms it. I do not believe that a reputable neurologist, whatever their subspecialty, would leave you in any doubt of those two things. And you had the EMG done by a neuromuscular specialist, sounds like.

I encourage you to get more or better counseling for the influence of your mind on your body, so you can better separate anything physical that needs treatment from what does not.

All the best.
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