Am i going crazy? or is it actually something?

[hina]

hello, everyone! Nice to meet you all.
I've been checking out this forum for a while but haven't been able to post until now!
I'm so happy that I found you guys but so sorry for all the ppl who have to be here. my english isn't so good. I don't know any big and fancy words you guys use. sorry it's gonna be loooooooooooooooong...

I'm a 30yr old female who's been having some concerning symptoms for 5months now. It started with very light tingling( like electric current) in my left hand below my thumb and pinky for short period time and my whole arm felt strange soon.( I know no sensory thing with ALS but...) I remember shaking my arm constantly thinking it would go away. that night and probably for about a week I experienced weird feeling in my left arm, hip, and left leg. no tingling no pain just strange feeling. this feeling was bothersome especially in the late afternoon and at night in bed. couldn't even sit still to just watch tv on the couch, my hip also would hurt little bit. saw a doctor, asked her if I have restless arm, leg syndrome. she laughed and said pinched nerve. no treatment was mentioned. the feeling went away but my arm problem persisted.

During the next two months I experience tireness, heaviness, pain( not actue,painful but dull, constant. like the body ache during a bad flu) only in my left upper arm. come and go. sometimes it felt a little warmer than the right arm. MY voice went hoarsy with no apparent reason for an hour, only happened once. ignored it. had shortness of breath four times in mornings, lasted about 30min. each.

2 months into the symptoms, my right hand ring finger got stiff. A week later again, the finger wouldn't type letter "p". It went away but cause me a panic attack for the first time in my life.( I didn't know about ALS yet.) I think a week later my whole body started twitching. Heaviness in my arms and legs like im carrying weight. That went away after a week but still my left arm wasn't normal with tireness and on and off pain. To make the matter worse, my right lower leg around the knee started having some discomforness. I can walk, run, tiptoe and everything but gets tired quickly and always feels like it's gonna give out on me. if I use it too much, it shakes and cant stand on that leg only.

4months into symptoms, saw a neuro and had an emg done in my left arm, hand, right leg, and back, all normal. told me it's stress. I wasn't satisfied because it was too quick! less than five min? for the needle part? is it normal? the emg didn't even pick up one twitch how is he sure there's no other bad company it keeps if it wasn't even presented? he only checked my reflexes in my knee and elbow. because he checked everything else and it was all normal a month before emg? he didn't even bother?

5months into symptoms. I hate to say that now my tongue twitches. it's occasional so far. and my togue doesn't feel right. when i talk it feels like i need extra effort to say all the words correctly and the tongue wouldn't fold enough? it moves around okay but when I talk it's stiff. also developed phelgm in my throat since new years day. when I eat banana I have to swallow twice to make it go down. the weird feeling I've been having in my left arm and hand.. well, I think I finally realized a couple days ago that it turned into weakness in my left thumb! I was washing dishes and tried to scrape something off a spoon with my left thumb, I had a hard time bcause it was so slow and stiff. I'm so scared now. I was going to ignore all this until I noticed my speech problem.
go to sleep would come out go sleep and that's it would come out thaddit. omg. what am I supposed to do? I'm so panicked right now!

could all this be just anxiety reaction or the emg was done too soon? limb and bulbar onset can happen together like this within 5months? any input will be greatly appreciated please!

 

[wright]

The symptoms that you mention (tingling and "weird feelings" along with the type of "swallowing problems" you describe in the absence of other bulbar problems) are not indicative of ALS. Furthermore, symptoms that come and go are not indicative of ALS. On top of that, the quick onset and global nature by which your symptoms have manifested are not indicative of ALS. Need I say more? I have a feeling I do, so I will.

You said that you were not aware of ALS until a few months into your symptoms . . . but then you started to twitch, which I'm going to assume you "googled" . . . and low and behold . . . ALS pops-up. Twitching is not used as a criterion for an ALS diagnosis, despite what you were led to believe on the internet. Do yourself a HUGE favor and get off of the internet because it has obviously led you down the wrong path.

What you have told us is not the story of someone with ALS and certainly doesn't sound life-threatening to me. Let the docs determine what is happening with you. In the meantime, relax.

 

[hina]

Thank you wright for your valuabe time for me.

I know my symptoms started with "tingling and feeling", but they are long gone. Although it may seem like it started in random global pattern, I've always had problem with my left arm regardless of other things(anxiety?) WENT on followed by constant right leg symptom a month later. The twitching wise...I did experience some mild left shoulder jerking(twitching?) at night in bed with the ache in my left upper arm, way before I knew about ALS and before I had panic attack. what worries me is my left thumb fiinally started showing real symptoms after months of perceived weakness. I've always wondered what it is that's causing me this strange feeling for months especially when I feed my baby with my left hand and finally can see that it's that finger. the neuro inserted needle in the muscle below my thumb after i complained about weak feeling, but it was okay. He didn't checked my forearm tho. I don't know......

Does anybody know the excessive phelgm in the throat mean? I'm embarrassed to spit in public. it's constant everyday. With this twitching in the tongue now I seem to have stiff tongue which gets worse towards evening hour and night. My hubby noticed the way I speaked and called my neuro himself to make another appointment for me.
ahhhhhh.....he will say it's all in my head. so far blood work negative for MG, less than 2yrs ago 2 normal brain MRIs(headache, dizziness, eye floater) so he ruled out MS even before I had evoked potential test to see my optic nerve two days ago. all normal.

I will ask my neuro if he can referred me to an ALS specialist. Even if it may not be what I have(hopefully), I will have to ge tested just to ease my mind. I will liet you know what happens with me. thank you for your time here with me. Have a lovely day!

 

[GlenBrittle]

Hi Hina,

I can only second Wright's viewpoints. He is one smart dewd.

Excessive phlem ? post nasal drip? allergy?

Dont listen to DR Google, it will cause paralysis by analysis.

Welcome to the site.
Glen

 

[gourav]

hi hina dont worry ur symptoms dont match with ALS n urage is not of ALS there is diff b/w MND n ALS....im a dr n suffering from MND....dont worry ndo as ur neuro says....it may b a neuropathy of a single nerve....

 

[hina]

thanks Glen and gourav.
If it doesn't sound like ALS, I may very well have something else going on definately..
I know only docs can tell me what it is. These symptoms are getting slowly worse, and this is my fourth day of having stiff tongue. Certain words don't come out correctly, and I have to say it twice. I don't believe it's anxiety. Sorry I sound so sick and weak. I was born a premature and have a twin sister. If this is something really bad, I have to worry about her and my baby girl. That's all.

gourav, thanks for your reply and sorry that you're suffering from MND. I just don't understand why my EMG was normal if I had MND or some type of neuropathy. those
can cause limb weakness, tongue stiffness( beginning of bulbar problem?), and twitching including my tongue WITH CLEAN EMG? gourav, if you don't mind me asking, what was your symptoms? I'm going to see a neuromuscular specialist next. thanks for your help and have a lovely weekend. It's raining in seattle.