Old 07-31-2007, 06:45 PM #1 (permalink)
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Default Concerned about ALS (long!)

Hi:

I am a 29 year old male, non-smoker, occasional drinker. Excellent health until my symptoms flared up.

Last thanksgiving, I woke up with an intense neck pain, exacerbated by moving my head. Symptoms resolved within a week. Now fast forward to mid-May.

I started experiencing tingling and warm sensations throughout both legs about two months ago. These symptoms soon turned to mild pain, greater in the left leg, and exacerbated by exercise. The leg pain is non specific and mostly dull in nature, punctuated by sharp, non-specific pain that moves throughout the leg (foot, calf, thigh). More recently, my calves are more affected. Also, I feel some pain around the knee area, and in the hip joint when I raise my leg by bringing my knee towards me. My balance is good.

On June 4, 2007, the right side of my face became numb with mild headaches, so I drove myself to the ER where a brain MRI was performed. The MRI was negative for signs of stroke or MS, but did reveal a Chiari I malformation with a 5 mm. herniation with no syrinx. A cervical spine MRI accomplished on June 14, 2007 reconfirmed the Chiari I malformation and showed no syrinxes. However, the MRI did reveal that there is a C3-C4 3mm left paracentral disc protrusion which causes moderate left anterolateral effacement of the thecal sac, with mild central canal stenosis and mild left neural foraminal narrowing (no right neural foraminal narrowing is seen. Slight ventral compression of cervical cord).

Over the course of the last two months, the bilateral leg pain slowly deteriorated and remains my chief complaint, with mild headaches occurring on and off throughout the day. I also started experienced tingling in both hands (especially little fingers), occasional pain in my arms and a feeling of elevated pressure in my head that leads to difficulty focusing when the headaches occur.

I saw a neurosurgeon last month, and he believes that the C3-C4 left spondylosis (which he feels is "recent" on MRI) is causing my headaches, facial numbness, and leg symptoms (particulary on the left side), and suggested I use a over-the-door cervical traction unit, which I started using last night. The doctor did not believe that the Chiari Malformation was causing my symptoms, since my headaches were not exacerbated by exercise or the Valsalva maneuver. To confirm, he ordered a CINE-MRI flow study across the foramen magnum for CSF flow obstruction, as well as thoracic and lumbar MRI’s for syrinxes. The CINE-MRI showed no obstruction of CSF flow across the foramen magnum and the spine MRI's turned out negative for syrinx or spine problems. The neurosurgeon also performed a neurogical exam, which was normal.

I then saw a neurologist. The neuro exam turned out clean, and he felt no need to run EMG's. He feels that my leg symptoms are due an injury sustained at the gym (perhaps from leg presses), and wrote me a prescription for physical therapy.

Well, neither the cervical traction device nor the physical therapy have helped. My symptoms have progressed: standing becomes increasingly painful and laborious, as both of my legs/knees get very sore with the feeling they're about to give out. Strangely, leg strength remains good and I can still run 3 miles and make good time. Most of the pain and leg discomfort arise when I stand, but walking and running dissipate the symptoms, as does sitting and sleeping.

I've also started getting twitches (fasciculations) all over my body, predominantly in my legs...which has me once again concerned. However, the fact that I am also experiencing sensory symptoms like pain, tingling, heaviness in my legs are somewhat reassuring...given that ALS is purely motor (hopefully!)

Upper body symptoms have returned over the last few days, with tingly and achy arms, and neck aches. Some urinary and fecal urgency. I am starting to think that my cervical cord compression @ C3-C4 is causing my symptoms, including the fasciculations. Or at least I hope.

I have a follow-up neuro appt. a week from today, an a couple of neurosurgeon ones after that. Looks like I won't be able to avoid the EMG this time; besides, I feel like I need it for peace of mind, or some more ominous confirmation.

Two questions:

1. if one has limb-onset ALS in the legs, would standing be painful or rather, would one simply not be able to stand because he/she is weak, with no pain?

2. has anyone experienced my symptoms with cervical cord compression?

This is definitely a humbling experience. Sorry for the long post.

Cheers.
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Old 07-31-2007, 10:53 PM #2 (permalink)
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your symptoms definitely sound like a herniation of disc or compression. My nephew has arnold-chiari and has similar headaches, facial numbness. do the emg for peace of mind but I bet your symptoms clear after your surgery.

Good luck
Gina
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Old 08-30-2007, 08:57 PM #3 (permalink)
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Hi everyone,

My neurologist gave me an EMG/NCV today, which was normal. I'm still awaiting the results of my tibial sensory evoked potential test. All blood work is normal or negative: ANA panel, Sed. rate, CPK, Lyme, Compl. Metabolic Panel, Fasting Glucose, Hemoglobin A1C, B12, and a few others.

I will be undergoing a flexion/extension cervical MRI tomorrow to better assess the C3-C4 cord compression in relation to my leg symptoms.

My follow-up question is this: My neurologist told me today that cervical cord compression CANNOT cause fasciculations anywhere, even below the level of the herniation, because fasciculations are lower motor neuron signs, whereas the herniated disc should only trigger upper motor neuron dysfunction. Thus, he's attributing my twitches to BFS and not cord compression. Was his statement accurate?

Thanks.
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