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Robb

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Sep 29, 2014
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Learn about ALS
Country
TH
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Bkk
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Bangkok
Dear All,

I had written on the forum around a year ago regarding some symptoms that i had developed, in a nut shell it started off as weakness in my arm and leg and then progressed into twitching all over my body, flash forward almost a year ahead and i can't really say if its gotten much worse but it had definitely gotten worse from what it was last September, the twitching comes and goes but lately it has been driving me crazy and is mostly subjected to my left leg and left bicep and arm, my left arm feel sore and tired, every time i exert a bit of pressure on my arms
they feel weak,heavy and start to hurt, i had some issues with swallowing as well and at times speech issues, my GP sent me to see a GI doctor as they thought it might be because of GERD and due to that they want to do a endoscopy soon, apart from that i do feel weaker all over my body, my right foot seems off balance when i walk and when i raise up my toes it seems the right foot can't raise up as high as the left, i also get pain and small twitches around my right foot in particular, i have various other symptoms such as head aches, neck pain, vision issues etc etc, honestly speaking i'm pretty sure i'm not healthy overall and i have a few things going on at the same time, some have been diagnosed, some are still left unanswered one of which includes a neuromuscular problem such as ALS, MND,which the doctors haven't figured out yet, i had my first EMG back in September which was clear and had another one in Jan this year which came back normal as well, i haven't done a lumbar puncture or muscle biopsy as yet but have done a lot of blood work regularly, the past year has been extremely tough on me and I've tried my best to beat this, i have even been doing water therapy exercise in order to build back strength but it hasn't helped me much as yet, i'm coming to the point where i'm getting pretty sick of life and hospital bills, would appreciate if someone can tell me if i need to worry about this and get it checked out further or it points away from ALS.

Thanks for your time
 
Hi Robb. I'm sorry to hear you have so many concerns and that it has gone on for this long.
Don't sweat the ALS thing - you don't have any ALS symptoms, and your doctors are not finding any clinical signs of it. TWO clean EMG's is something to celebrate.

Maybe you should ask for a referral for some anxiety help? It could certainly cause all the symptoms you are describing.

All the best sorting this out.
 
Nothing here points toward ALS. Two clean EMGs definitely point away from ALS.
 
Thanks for your feedback, makes me feel much better and motivated to fight whatever this is, my right leg however is getting much worse, seems like its always tingling and twitching around my knee, foot and thigh but accompanied by pain sometimes and some weakness.

Hope it can improve soon.

Appreciate your time everyone.

God bless
 
I made a thread on my story but has been closed, no big deal.

I just want to give a update and squeeze in a question... I had a emg done at UCSF by Dr. Ralf, from what I hear he's really good... Everything came out normal, normal emg.

I have muscle twitches and feel unsteady on feet... My question is, it's been 2 years of symptoms... What are the chances that I was checked too early?... That I'm just not showing the symptoms just yet?
 
The EMG would be abnormal even months prior to ALS symptoms showing up. Remember, in ALS, first comes the nerve damage, then come the symptoms.

Twitches are so common that they not diagnostic of anything. Fully half the population has twitches. They happen more as we get older. Mine were very noticeable at 25, and I don't have ALS. I'm 60 now, and twitch all the time. I consider it an amusing product of all the stuff I did to my body during my life.

Feeling unsteady on your feet: Lots of possible reasons for that. Don't leap from a common symptom to rare disease.

(If you did have ALS for these two years, you'd probably be very seriously disabled by now.)

Normal EMG is great. Don't sweat ALS. Don't worry about twitches. If the unsteadiness bothers you, follow that up with your doctor. Good luck.
 
Atsugi iagree.

I've never thought of also because I don't had any clinical weakness or atrophy.

I told my burrow that when she adked me if I ever had a emg, she claimed the weakness and other stuff could come later but I disagreed in my mind... my doctor never thought of als... I've always felt that it could be parkinsons so she sent me to a movement disorder speacilist at uscf, there the specialist saw a twitch in my leg but saw nany on mu tounge that i never noticed ... I later lookedat my tounge and I do have twitches there so I looked at my girlfriend tounge and her twitches too... so I felt it wwas normal but the specialist wanted the eng done... he kinda put itto in ny head that maybe it can be... he said the emg guy was the best snd that I should only have it done by him.
 
I can't edit my post.

Also = als

Burrow = nuero
 
I had fun thinking you get medical advice from your burro.

Don't sweat ALS. If you do have some sort of neurological thing going on, there are plenty of other things it could be.
 
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