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mazza22

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Joined
Feb 23, 2015
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9
Reason
Learn about ALS
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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?
 
Generally an emg will show before onset of weakness but you were examined and had no signs of ALS so EMG not needed sounds right. Occasional perceived weakness is not ALS ALS weakness does not get better or come and go
An emg is mildly uncomfortable to some torture to others
Yes I would agree about the eye twitches
4 no
5 you have the experience of many bfsers to tell you that in bfs they do not always go away.

If you have a known vit D deficiency that could contribute to your symptoms.
I don't see how you can say neuro did not look for atrophy. While checking strength reflexes etc he would have been looking. It is not necessary to measure to see Atrophy in ALS.
Your symptoms don't sound like ALS, and the neuro cleared you. You are lucky
 
Thank you Nikki.

Glad you also agree with what the neuro said. I guess the thing that made me unsure about him was what he said about the EMG being too early (which is different to what I had read), plus he actually also said vit D doesn't cause twitching, which also opposed some things I read. This made me question his other comments. Plus everyone else who ended up with BFS went through months of test to get to that diagnosis after ruling everything else out. So I just wasn't sure if it was a good idea to do that or just listen to him.

I guess for me the fact that the fascis occasionally happen everywhere (although 80% in the legs, mainly left) and they they started in the eyes is what lead him to the conclusion he did.

Do the cramps and tight calf muscles mean anything? And so you honesly feel that I really don't need an EMG?
 
Anyone else address my questions please. I need to decide whether or not to follow up with another neuro for further testing or second opinion.

Does my history/symptoms warrant any concern? Is everything my neuro said accurate?

Please let me know your thoughts.
 
Doesn't sound at all like ALS to me. I totally agree with Nikki. The doctor examined you well. They don't comment upon everything they see, and they see a lot very quickly.

Personally, I wouldn't sweat it. As we begin to age our bodies do amusing things. If you're still concerned you may have a fatal disease, get a second opinion.
 
Guys,

I noticed as I was trying to fall asleep tonight that my tongue is now twitching.

What does this mean? Can it signify bulbar onset?

Please help.
 
Stress can cause twitching everywhere. Worrying about ALS (this is a proven fact) can actually cause widespread twitching. You do not sound like you have any type of ALS.
 
Thanks for the comforting reply. I guess anxiety takes the better of you. Like for the last few weeks I've had a hoarse voice and constantly feel like I have to clear my throat and just thought it was Gerd.

The last couple of days after reading that hoarse voice is a common early symptoms for some people (especially with bulbar), I started stressing that my voice, together with the twitching, especially last night in my tongue could mean ALS.

The thing is I didn't even mention the voice to my neuro because I didn't think it could be related plus it's not constant. It comes and goes. Lasts a day or 2 and disappears for a few days then I wake up with the hoarseness again.

I don't know if I should be worried?
 
Please stop posting additional symptoms. Your neuro cleared you. If you don't believe him, see another. Or perhaps you should print this thread and take it to your GP. You are not going to get anyone here who is dealing with ALS to tell you to be worried, especially when you add something new everytime you are told to relax. Honestly, there's nothing more we can do for you. We are not doctors. You should take these additional concerns to your doctor if you are unable to relax and let them go.
 
Nothing "comes and goes" with ALS. It is a progressive disease. And my husband has had bulbar onset going on four years. He was not hoarse, his tongue just wouldn't move to form sounds. You really need to stay away from google and this forum. It is feeding your anxiety.
 
> stay away from google and this forum. It is feeding your anxiety.

Ditto that!
 
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