Dagw
New member
- Joined
- Jun 11, 2021
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- NO
- City
- Oslo
Hi, thanks so much for sharing your experience and helping to answer concerns.
I'm a 46 year old male. I started feeling heaviness in legs and twitches 10 months ago. Since then I've had extreme and crippling anxiety which has severely affected my functioning. The twitches have been persistent and after a while body-wide, though mostly concentrated in the legs.
In the past five months or so, the heaviness has been more pronounced in my left leg above the knee. One person has commented that my gait was odd. I tried running a week back and could only manage about 2k before legs were exhausted.
From March until May, a muscle in my thumb was twitching almost non-stop. More recently, my left wrist started hurting when doing certain movements. My index finger on the left hand feels weaker or slower, noticeable when I type or play the guitar. I've been doing strength exercises with and without weights and recently I've been able to do fewer repetitions, especially with my left arm.
In the past week, I've noticed a painless «twitch» in my left heel whenever I jump or kick which is hard to describe, a feeling that something is «loose» in the heel.
My tongue has started to feel funny, seems thicker on one side than the other and sometimes tripping over words. I have felt a few twitches in the tongue, but not a lot and I've never seen one while the tongue is at rest.
I've had a total of four complete normal clinical exams by a neurologist, the last one a few days ago after feeling very anxious.
March 17, I did an EMG as suggested by my neurologist to ease my fears. This was the conclusion:
«Conclusion: Neurography of both upper extremities and both lower extremities shows normal findings except for slightly reduced peroneus nerve conduction velocity at left knee, random findings without clinical relevance. EMG examination of 12 muscles shows fasciculation potentials in a muscle (from m abd poll brevis in left oex.) Mild neurogenic effects / re-innervation changes in right calf muscle innervated from the peroneus / L5. Apart from this normal findings.
Assessment and measures:
-EMG findings may fit with influence from the neck / back.
-No signs of neurological disease in the peripheral nervous system / ALS.
-If clinical deterioration/tongue fasciculations, consider control EMG after a few months if needed.»
I spoke to my neurologist afterwards (in March) and he said that this took ALS off the table and all stones had been turned. After my clinical exam this week, he reiterated this. He ordered an MRI of my spine, which is in two weeks time, as he suspects a pinched nerve or tight nerves.
I do have an EMG scheduled June 28 (this was my original appointment, but because of my anxiety I booked an appointment at a private clinic in March).
So my question is two-fold:
1) Am I cleared of ALS now or do I need to worry about my current symptoms, which seem to be worsening?
2) Should I do the second EMG? Although the conclusion was reassuring, I worry about the fasciculation potentials in the first one (which I understand is something different from fasciculations and may indicate ALS (?)). My girlfriend is adamant I should not take it and instead work on dealing with my anxiety. I'm worried new, ambiguous findings will turn up that will fuel my anxiety further.
I really appreciate your time in considering my case and promise not to burden you with endless follow-up questions.
I'm a 46 year old male. I started feeling heaviness in legs and twitches 10 months ago. Since then I've had extreme and crippling anxiety which has severely affected my functioning. The twitches have been persistent and after a while body-wide, though mostly concentrated in the legs.
In the past five months or so, the heaviness has been more pronounced in my left leg above the knee. One person has commented that my gait was odd. I tried running a week back and could only manage about 2k before legs were exhausted.
From March until May, a muscle in my thumb was twitching almost non-stop. More recently, my left wrist started hurting when doing certain movements. My index finger on the left hand feels weaker or slower, noticeable when I type or play the guitar. I've been doing strength exercises with and without weights and recently I've been able to do fewer repetitions, especially with my left arm.
In the past week, I've noticed a painless «twitch» in my left heel whenever I jump or kick which is hard to describe, a feeling that something is «loose» in the heel.
My tongue has started to feel funny, seems thicker on one side than the other and sometimes tripping over words. I have felt a few twitches in the tongue, but not a lot and I've never seen one while the tongue is at rest.
I've had a total of four complete normal clinical exams by a neurologist, the last one a few days ago after feeling very anxious.
March 17, I did an EMG as suggested by my neurologist to ease my fears. This was the conclusion:
«Conclusion: Neurography of both upper extremities and both lower extremities shows normal findings except for slightly reduced peroneus nerve conduction velocity at left knee, random findings without clinical relevance. EMG examination of 12 muscles shows fasciculation potentials in a muscle (from m abd poll brevis in left oex.) Mild neurogenic effects / re-innervation changes in right calf muscle innervated from the peroneus / L5. Apart from this normal findings.
Assessment and measures:
-EMG findings may fit with influence from the neck / back.
-No signs of neurological disease in the peripheral nervous system / ALS.
-If clinical deterioration/tongue fasciculations, consider control EMG after a few months if needed.»
I spoke to my neurologist afterwards (in March) and he said that this took ALS off the table and all stones had been turned. After my clinical exam this week, he reiterated this. He ordered an MRI of my spine, which is in two weeks time, as he suspects a pinched nerve or tight nerves.
I do have an EMG scheduled June 28 (this was my original appointment, but because of my anxiety I booked an appointment at a private clinic in March).
So my question is two-fold:
1) Am I cleared of ALS now or do I need to worry about my current symptoms, which seem to be worsening?
2) Should I do the second EMG? Although the conclusion was reassuring, I worry about the fasciculation potentials in the first one (which I understand is something different from fasciculations and may indicate ALS (?)). My girlfriend is adamant I should not take it and instead work on dealing with my anxiety. I'm worried new, ambiguous findings will turn up that will fuel my anxiety further.
I really appreciate your time in considering my case and promise not to burden you with endless follow-up questions.