mazza22
New member
- Joined
- Feb 23, 2015
- Messages
- 9
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- AU
- State
- NS
- City
- Sydney
Thank you for taking the time to read and respond to this. Since coming across this condition, i can't imagine what you all must be going through. I'll try to keep it as concise as possible.
History
1. Started with Fasics 2 months ago in eyelids.
2. Within 1 week spread to nose, upper lip and left leg.
3. Now mainly in left leg, right foot and occasionally everywhere else (legs, face, back and a couple in the arms).
4. Other symptoms: Occasional weakness in right hand, cramps in both feet, Fasics that don’t stop when muscle is tense and looking in the mirror I feel like I’ve lost some muscle in thighs and feet (but this could be in my head).
5. Saw Neurologist who was able to see the fasics in both legs and face. He said I have no clinical weakness and normal reflexes but didn’t look for muscle apathy ( I guess he had nothing to compare too).
6. Told me it is BFS due to the following:
a. My age
b. That I’ve had anxiety and little sleep over last couple of months (Several failed IVF attempts and daughter who ended up in a wheel chair for a couple of months due to an injury).
c. That the fasics are widespread
d. That they started and still present in the eyes because ALS doesn’t cause fasics in the eyes.
7. He said that no need for EMG as its ‘unpleasant’ plus even if it was ALS, it would be too early to show on EMG. He is just doing a blood test called CK (no idea what that is but he said its to test muscle enzymes). Didn’t do any other tests at all, despite me telling him I have high Estrogen (as a result of IVF treatment and many low vitamins such as Vitamin D).
Questions:
1. Is this accurate that even if it was ALS there is no need for an EMG as it would be too early to show anything?
2. And is an EMG very painful and unpleasant as he suggested?
3. Is it accurate in what he said that Fasics in ALS don’t start or affect the eyes?
4. Is it dismissive of him to call it BFS without any further testing?
5. I’ve read that in BFS the fascis go away if you flex the muscle (although some people online say that they have BFS and their fasics don’t go away, but actually get aggravated when they flex the muscles. Is this something that can indicate ALS vs BFS?
History
1. Started with Fasics 2 months ago in eyelids.
2. Within 1 week spread to nose, upper lip and left leg.
3. Now mainly in left leg, right foot and occasionally everywhere else (legs, face, back and a couple in the arms).
4. Other symptoms: Occasional weakness in right hand, cramps in both feet, Fasics that don’t stop when muscle is tense and looking in the mirror I feel like I’ve lost some muscle in thighs and feet (but this could be in my head).
5. Saw Neurologist who was able to see the fasics in both legs and face. He said I have no clinical weakness and normal reflexes but didn’t look for muscle apathy ( I guess he had nothing to compare too).
6. Told me it is BFS due to the following:
a. My age
b. That I’ve had anxiety and little sleep over last couple of months (Several failed IVF attempts and daughter who ended up in a wheel chair for a couple of months due to an injury).
c. That the fasics are widespread
d. That they started and still present in the eyes because ALS doesn’t cause fasics in the eyes.
7. He said that no need for EMG as its ‘unpleasant’ plus even if it was ALS, it would be too early to show on EMG. He is just doing a blood test called CK (no idea what that is but he said its to test muscle enzymes). Didn’t do any other tests at all, despite me telling him I have high Estrogen (as a result of IVF treatment and many low vitamins such as Vitamin D).
Questions:
1. Is this accurate that even if it was ALS there is no need for an EMG as it would be too early to show anything?
2. And is an EMG very painful and unpleasant as he suggested?
3. Is it accurate in what he said that Fasics in ALS don’t start or affect the eyes?
4. Is it dismissive of him to call it BFS without any further testing?
5. I’ve read that in BFS the fascis go away if you flex the muscle (although some people online say that they have BFS and their fasics don’t go away, but actually get aggravated when they flex the muscles. Is this something that can indicate ALS vs BFS?