Seems like ALS

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dbailey8211

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Hi all - thank you for all the time you take out of your days to help the anxious folk like myself (25M). My symptoms started in early January and have drastically changed over the course of the last 3 months.

Jan 2022: Started with dizziness which lasted nearly a month straight, not vertigo but more like lightheadedness. 4 days later I got constant tingling in my right leg, which spread to my right arm and the left side of my face. I went to the ER 2 days later as this continued and they ran every test possible (MRI w/wo, CT w/wo, blood work, EKG) which all came back negative. I began to have constant tension headaches and developed a slight limp in my right leg as it felt incredibly tight. They referred me to a neuro for follow up and said it was paresthesia. The dizziness lasted nearly a month straight before going away.

Feb 2022: The sensory symptoms started to subside and motor symptoms began to appear. My right leg continued to feel tight and I started to get body-wide twitching. It would find certain hotspots for a hour or two at a time and jump around. The facial sensation (feels more tight than tingly) spread from the left to the right side of my face and has remained on both sides for a while. I saw a neuro in late Feb (1 month after symptom onset but 1-2 weeks after twitching started) and he noticed bilateral lower-body hyperreflexia (3+) with a slight jaw jerk but no other abnormalities in the clinical exam (no Hoffmans, Babinski). I had also developed a slight body-wide tremor almost as if I was internally shaking. Since I complained of some perceived weakness and a slight limp (that he did not notice in the clinical), he ordered a 4-limb EMG to try to put me at ease.

Mar 2022: Had an EMG of 4 limbs and the tongue on March 1st, all of which came back totally clean. This put me at ease for a few weeks and I tried to move on. However, I started feeling twitching just in my right calf (the one that felt tight) in late March. My joints also all started cracking at the same time, not painful but almost as if a switch was flipped on and every joint throughout my body cracks every time I move. I have developed on and off slight cramps in my forearms, not a full Charlie horse at all but slight pain that can last seconds to minutes bilaterally.

Current: Having read the read before posting at least 5 times, my most concerning symptom now is my right leg is not fully cooperating. When I stand, it is slightly pointed out and I can tell I am starting to slightly limp. It does not feel weak, it just isn't cooperating fully and is as if I have to think about it every step I take to not let it drag (but I haven't fallen yet). I have been able to run still, but it is definitely requiring more thought on my right leg than before and is getting slightly worse every day. The twitching has been localized in my right calf and has started to spread to my left calf as well, but neither are constant and feels more like a few per hour. I also see them when sitting / standing but only feel them when sitting. I have a consistent tremor throughout my body and feel very tight when waking up, especially in my hands, which is also getting slightly worse everyday. I saw neuro again this week and he said still normal exam outside of bilateral brisk reflexes, although he did notice I was standing with my right foot slightly out. Have had all blood work, MRI, CT, EMG and all has come back negative so far, but I know something is wrong.

My questions are below - thanks for your help:

1. Is it possible that my EMG was done too early as the twitching was not yet localized and I really only had some heavy feelings 6 weeks ago (vs. now a slightly weak right leg with no feelings)?
2. Is it possible that I had some other virus / trigger in January that was causing sensory symptoms and has just recently triggered ALS to start? My reflexes have not changed since my first neuro visit though, and I am wondering if that would even be possible in a time period of a few months
3. Would upper motor symptoms start body wide? My tremors are everywhere, slight cramping on both sides, and my brisk reflexes are bilateral.
4. Has anyone had body-wide joint cracking as a symptom? I am told during multiple massages / acupuncture sessions that I am very tight, and wonder if this is what is causing the consistent cracking just about anytime I stand up, swing a golf club, etc. The rheumatologist said my joints seemed strong and fine
5. Has anyone presented with facial tightness? The initial tingling has gone away and it now feels like there is a constant dried mask on my face. I wonder if this is what facial spasticity could present as.

Overall, I am wondering if there is even a few % chance this is ALS and I should pursue another EMG. I have also started on some anxiety medication as I have spent way more time on this forum than I would like to. Let me know your thoughts and thanks a lot for all you do.
 

ShiftKicker

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1: The Read Before is pretty clear. If you get an EMG on the limb that is affected and it doesn't return a result indicating LMN issues, then you will have to look for some reason for symptoms other than ALS.

2: Viral- yes to reasons for issues, no to a virus causing/triggering ALS. COVID can cause neuro issues long after you first get it. Other viruses can cause issues too. This is something to ask your doctor.

3: No. Not in motor neuron disease.

4: Nope. Tension is not spasticity.

5: No, this is not facial spasticity.

Hope that helps out. It sounds like you're working with your doctor to figure things out and are also seeing an RMT to work on alignment and tension- that's excellent. Be patient waiting for positive result. If it's post viral stuff, it could take a while.
 

lgelb

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Tremors and a feeling of weakness that requires concentration in movement are not an ALS onset picture, nor is your clean 4-limb+tongue EMG. If tightness is a consistent pattern, I agree that therapeutic massage and other bodywork such as Pilates or tai chi might help, along with some detective work/video to make sure your sleep is refreshing and your breathing in sleep is normal.

Best,
Laurie
 

dbailey8211

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Thank you both for your time - appreciate you reading through my story. Will come back if I find anything else out in the future
 
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