Status
Not open for further replies.

RR123

New member
Joined
Dec 23, 2016
Messages
3
Reason
Learn about ALS
Country
SG
State
singapore
City
singapore
Female, age 39.

Pardon my bad English as I am not native speaker.

Aug 2016- my right under eye had this constant small twitching like a heart pulse for 1 week.

Sep 2016- the under eye constant small twitching like a heart pulse came back again. My Best Friend knows a doctor who Is a young neurology doctor and he said this is Blepharospasm And gave me Rivotril. After 3 days of taking Rivotril, I started to have body wide fasciculation.

nov 2016- I consulted the same neurologist and he put me on NCS and EMG.

The NCS showed my sensory is normal but motor is at borderline. He was concerned that this may be early ALS and he said EMG will be more certain. As I am his friend's friend, he did a very detailed EMG on my body, he said he did almost over 15 area of needle testing. He found 2 area of spontaneous activities and he said he had to discuss these findings with his neuromuscule professor over the tests we had done that day.

Neurologist texted me that night," after we carefully reviewed the EMG, we consider it is highly unlikely you could be diagnosed for ALS for now.if you have any changes in symptoms, feel free to discuss with me.

Gave me Inderal for the fasciculation, but the Med doesn't stop the muscle twitching.

Dec 2016- body will jerk a little before drifting into sleep. Neurologist said this is not serious and is an form of sleep disorder.

Started to get dizzy while walking or standing and I realised that it is not my head that is dizzy but because my body is swaying abit and causing me to feel dizzy.

Did a comprehensive full body check-up and my report came out well. In fact one of the ENT who checked my ear noticed that my body sway while I closed my eyes and suggested that I see neurologist.

Back to neurologist yesterday and he gave me Fluzine for the dizziness and xanan for anti-anxiety. I to,f And I asked him about my EMG report done in NoV and he clicked on his computer and I saw his comments which he got abit nervous while I was reading it. There were many medical term and I read one part he started " chronic denervation on right bicep." Of which I asked what was that meant and he said it may be old injury from the past. I also read "active denervation on xxxx ( can't understand the term) , which i didn't ask him on the spot as I was quite overwhelm reading the EMG comments which doesnt sound very clean at all. After I left the hospital, I texted neurologist if I should be concerned about the active denervation found in my EMG, to which he replied," no need worry, active means those fasciculations we saw."

My feeling is the neurologist is trying to protect me having a disgnosis of ALS until I have more evidence symptoms such as weakness. However I told him that if anything I would prefer to kmow early so I can plan early. Now with the fasculation and body swaying, I am just worry to sick right now and I don't know when is the next sysmtons gonna show.

Anyone can share some insight with me? I know fasc is not a hard fact of ALS but many PALS do experience it. Is body swaying a sign my body muscle is weakening?

Thank you all for can help me with my questions...
 
No evidence of ALS in your post.
Eyelid twitch is very common and has nothing to do with ALS.
Body twitches are common in many conditions. They do not point to ALS.
If neurologists physically examine you and then give you EMG test, then they have done a good job.
If he said no ALS, believe him.
Never heard of body swaying caused by ALS.

Why would a doctor say 'no ALS' and lie? If you actually had ALS coming on, then he would be in great trouble.

I see no reason to think about ALS.
 
Thank you mike for your prompt reply!

i read somewhere on the forum that someone noitoced her PAL started to swag while using his phone. therefore it got me thinking this could be a sign of muscle weakening.

i kept telling my neurologist that it is my body swaying causing me to feel dizzy and not because i have a true dizziness as i felt fine once i find support or lie down flat.

i am considering to request for a copy of my report from my neurologist and seek a second opinion but i don't want to appear to him that i don't trust a single thing he said given that he had gone extra miles to do detailed EMG and replied my texts... :(

i noticed that you have been very helpful with all the queries posted in the forum. I am sorry about your wife, life goes on but it is never quite the same...

wishing you a blessed 2017!
 
For any important diagnosis, ruled in or ruled out, you should always get a second opinion. That is a normal thing to do. In fact, I'm sure your neurologist would be happy to recommend someone to do the second opinion. Simply ask. "Who do you suggest I can use to get a second opinion?"

Hey, RR123. If I can get back to Singapore--it's been a long time--where do you recommend to have some fun?
 
hi mike, for tourist things, it would be Sands casino, garden by the bay, universal studio, singapore night safari, sentosa.

for local fun, go to east coast park to enjoy seafood dinner by the beach! a walk around changi village in the day time and hang out by the changi beach drinking cold beer and cycling is good too. i also love going to mount faber at night to enjoy the night city view and having some drinks there. if you like rock music, do check pint the band Unexpected at wala wala pub at holland village,lead singer sheryl has amazing voice.

if you do come back and i am still "all good", send me a message and i would love you take you to Wala walk. :)
 
Status
Not open for further replies.
Back
Top