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kawinpr

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Feb 1, 2017
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Learn about ALS
Country
US
State
NY
City
Queens
Hi there,

Thank you so much for being here. This is the first time I post here. I'm from Thailand and English is my second language, so I apologize in advance. I will try to be as clear as I can.

My symptoms have started for about 1 - 1.5 months now including weakness in left leg and left arm and fasciculations all over the place (legs, arms, abdomen, back, eyelid and lip).

Nerve conduction study (4 limbs) and EMG (legs and left arm) were performed.

NCS: Sensory nerve conduction study of the bilateral sural and superficial peroneal nerves were normal. Sensory nerve conduction studies of the bilateral median, ulnar and radial nerves were normal.

EMG: Monopolar needle EMG examination of seleced muscles in the left upper and bilateral lower extemities representing C5-T1 and L2-S2 myotomes respectively showed mild ongoing denervation in bilateral gastrocnemius and bilateral biceps femoris muscles. EMG of bilateral lower lumbosacral paraspinal muscles showed mild ongoing denervation. EMG of the left mid thoracic paraspinal muscles and genioglosus muscles was normal.

Impression: ABNORMAL study. These electrophysiologic findings are suggestive of mild, ongoing, bilateral lower lumbosacral (L5-S1) radiculopathy. There electrophysiologic findings still do not fulfill the electrophysiologic diagnostic criteria for generalized disorder of motor neuron and their axons.

Also, MRI of lumbosacral spine was performed:
All normal, except: Diffusely mild T2 hypointense, mild degenative discs are visualized from L3 to S1, no significant decrease in disc height and no associated disc herniations, described as the following: At L3-4, At L4-5 and At L5-S1: mild diffuse disc degenrative bulging; still normal central and lateral spinal canals are seen and no compressive lesions to nerve roots are demonstrated.

So, what worrying me is MRI of L-spine is clear, no nerve root compression to cause denervation. Does this look like early findings of ALS or other conditions? I feel like everything is pointing towards MND. I'm very worried.

I attached photos of NCS and EMG findings.

Thank you for any information. It means a lot to me during this difficult time.
 

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Hi, Queens,

I can see why they say the EMG does not demonstrate ALS. What is the plan for working toward a diagnosis? When you say "weakness," has clinical weakness been acknowledged by your neuro?

Best,
Laurie
 
Hi Laurie,

Thank you so much for responding.

The EMG doctor suggests another EMG test 3-4 months from now to see the development. This was the 2nd EMG run (about 4.5 weeks after symptom onset). The 1st run was 2 weeks ago (about 2.5 wweks after symptom onset). My first EMG tested only left leg (with acute denervation findings in same muscle areas). So, it came to my surprise to find my right leg having ongoing denervation too on my 2nd EMG.

My neurologist has not seen the result from the new NCS / EMG study yet. I have appointment with him this weekend. He has not yet claimed 'clinical weakness' of ALS when discussing the 1st EMG result. It suggested 'mild lower left lumbar radiculopathy". Obviously, after the 2nd EMG, it suggests 'mild lower bilateral lumbar radiculopathy'. ..whuch made me really scared becuase of additional acute denervation finding.

I would like to ask your opinions:
- Is it possible that these are early findings of ALS (1 - 1.5 months of symptoms)? I understand all EMG findings to meet definite ALS criteria take time to develop (signs of chronic innervation, presense of denervation in multiple areas, etc.)

- I understand fasciculation symptoms are not considered by doctor when establishing case for ALS as it can be BFS. I try to think mine is associated with increased stress. But I had health stress before in the past and never experienced fasciculatiins like this. On top of EMG findings, this ongoing fasciculations made me really worried about early ALS.

- What are other possible conditions that can cause these EMG results? How strongly suggestive is 'mild bilateral lumbar radiculopathy'? MRI results lok.clean - no compression to nerve root.

Sorry for long list of questions. I really appreciate your time and your kindness.

Thank you,
Kawin
 
By the way, I am a 40 year old male with desk job that requires me to sit in front of computer 8 - 10 hours a day.
 
What you need to worry about is chronic denervation with chronic renervation. The results say lumbar riduculopathy. Good news, it doesn't sound like ALS. I wish I were so lucky. Listen to your docs not strangers on the internet who aren't doctors.
Vincent
 
Hi Vincent, thank you for your reply and encouraging message. I really wish all these eventually turn out to be lumbar radiculopathy.

It's just that I got an opinion from another neurologist who reviewed my first EMG (denervation in left leg only) and MRI and said it can be early MND (not identified what type yet). She said my MRI looked clean and there was no evidence of nerve compression to cause denervation picked up in EMG. Now after 2nd EMG with evidence of denervation in both legs, that clean MRI finding needs to support bilateral lumbar radiculopathy (not just left side).

I'm also worried about new symptoms that keep happening that I rarely experienced in my life before - muscle twitching all over my body, mild abdominal cramp and twitching and now tired left shoulder and arm.

I appreciate your kind message. I will continue to keep my hopes up.
 
To be honest, the stress and worrying this past 3 - 4 few weeks have really taken a toll on my body. I couldn't eat well (I dropped like 4 kgs). I have troubling sleeping, which seems to increase my heart rate a lot. My heart is pounding when I wake up in the middle of the night. I feel tired and sleepy during the day. This thing really affects my work. I cannot put my mind off it. I keep reading and reading and reading. There are abnormal findings and there are obvious ongoing symptoms and I need to know what I have. I don't know how to calm myself down. The doctor prescribed me nortriptyline. I will try taking it.

Thank you for listening to me.
 
My legs are progressively weaker really fast. It's hard to walk now. Can ALS progress this quick? My first notice of weak left leg is January 5th and I can still run; now it's February 8th and I can barely walk. PLEASE HELP!!
 
Not sure when you see a neurologist next, but you need to write down the questions you wrote here and ask the neuro what they all mean. The people here are pretty much experts in a very narrow field, and likely are not able to help you diagnose yourself with something based on the symptoms you've listed. It's not a dismissal of your health concerns, only that at this point in time, they are unable to provide you much more with regards to the myriad things your symptoms could be caused by. A neuro is the one who can continue to guide you in the right direction and can continue to order further testing and/or a referral to the appropriate specialist.
 
Kawin,
You're right, the serial EMGs are concerning. You wouldn't be the first to have the first scan not show an actual structural problem, though.

If you only had the L-spine imaged, I would ask the neuro this week about getting a study of the C-spine, to cover the bases, and also about a sleep study. I realize your sx are centered in your legs.

I would also make an appointment at an academic medical center if you're not already at one.
 
Hi Laurie,

Thanks again for your reply. This may sound strange to you... but I think I have come to term that I have early ALS. The EMG findings (although early) and obvious symptoms (tongue fasciculation!!).. I don't know how to deny it.

I will have to plan everything quickly while Im still physically strong.

Thanks again for your kindness.
 
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