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Ctizzle82

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Scared it's ALS and now MORE SCARED

Two months ago i started twitching in my right arm. It started in the forearm and would make my fingers and thumb move. Today I twitch constantly in the same arm as well as other random spots in the body. My right calf has started to tighten up, it's not painful but stiff. No twitch in calf though. Seems like the twitches come from only the right side of body wherever they occur. Two weeks into my twitching i had an EMG and my neuro said it was normal. I convinced myself after that that I didn't have ALS and it was probably BFS. I didn't have the hallmark symptom of weakness and I learned how rare the disease is. Just two days ago I started having weakness in my right arm. It's not imaginary weakness because my arm gives out really quick when i'm doing anything with my right arm and hand. My hand has been cramping and feeling weak. I know there are no good and bad days with ALS and going on day 3 the weakness has been consistent. For the last year i've noticed a cognitive decline and my reflexes are not what they used to be. Everyone knows their body and what it feels like to "feel well and normal." I get these headaches on a daily basis where they impair me from carrying on normal activities at work. I stutter my speech and at times i'm confused as to what I am doing. My motor movements are slower and rigid. My decision making is blurred. Simply put I can't concentrate. I have had CT scans and an MRI and they have come back outstanding from what i hear. I just recently a week ago had a neck MRI and nothing unusual there. There is no explanation for these headaches.

Along with body-wide twitching (mainly in right arm) I have been experiencing other unusual and new symptoms. My hands and feet are always cold. They are either freezing cold or really warm. I live in Michigan so the cold weather has gotten to me. Along with the twitches in my right arm there is at times numbness and warmth. My hands cramp easily and tops of my hands sometimes hurt. I am positive there is weakness but I haven't seen any major muscle atrophy, I look everyday. I'm only 31 years old and newly engaged. I'm scared of these symptoms and every way I look at it i know that it is going to probably be something serious. I feel like my nervous system hasn't been the same since my doctor tried to put me on celexa 4 months ago. I quit that stuff after a month. I've never been the same since. That can't be the reason though. I have been even more terrified since the weakness in my arm and hand has started. What else could it be? Probably a hundred different things... Could it be just a pinched nerve or just nerve damage in my right arm? Or maybe peripheral neuropathy? I'm new here to this forum and scared. Thanks.
 
Re: Scared it's ALS and now MORE SCARED

You need to listen to your doctor. No one on here is going to give you any answers or diagnosis. If your tests are coming back with news that you don't have this dreadful disease, REJOICE! Everyone here wishes their tests had come back with such good news! I've read where excessive twitching can actually be brought on by the stress of worrying that you may have ALS! Sure sounds like that. Also, you say your reflexes are not what they used to be. Did you know that ALS causes just the opposite? PALS have brisk reflexes. Please celebrate life and occupy your time planning that wedding and a long life! God bless.
 
Re: Scared it's ALS and now MORE SCARED

Body-wide twitching is not a symptom associated with ALS. My guess is that you are stressing a lot over this, and this is enhancing your symptoms and making the existing symptoms worse.

There is a difference between clinical weakness and perceived weakness. With clinical weakness your hand is not "giving in real fast", you simply can't do what you used to do before.

An example would be lifting a weight of let's say 5kg. Clinical weakness is not about how many times you can lift 5kg, it is about not being able to lift it at all.

With that said, I would recommend taking a blood test for Lyme Disease, which is much more associated with cognitive decline than ALS is.

But, headaches and stress can of course in itself cause your brain fog. Try to relax.
 
I have been dealing with unexplained symptoms for over a year now. Started over a year ago with vision problems and being mentally out of it. Then I had gastro problems and breathing issues. Never had one issue until over a year ago. I've had CT scans and an MRI of the head and neck. Both came back normal. Neck MRI was just two weeks ago. Two months ago I started randomly twitching in my right forearm. I was already seeing a neuro when I brought this up and he said it's probably nothing but to do an EMG just in case. Two weeks later had an emg and came back normal. I had no weakness at the time. Last week I started noticing weakness in my right arm. By this time my twitching was all over my right arm and I noticed it it random other parts of the body (calf, thigh, abdomen, back, face and head). I just recently saw my neuro and he said that he didn't notice anything out of the ordinary except that I have hyperactive reflexes. Just touching my knee tendon and my leg flys kicking forward. I had a neutral babinski reflex as well. My speech is different these days. I stutter a lot and can't find the right words often. I end up repeating phrases until they are complete with what I want to say. My hand/eye coordination is not what it used to be. I'm slower at things and my motor skill with hands and arms are just not put together. I've been having tingling sensations throughout my limbs and numbness in arms, hands and feet. They are either numb, cold or hot. I thought at first that maybe it was some neuropathy that was causing my arm to twitch knowing that these sensations are I typical or ALS. My doctor suggested fibromyalgia but I'm convinced it's not that since I don't have widespread pain anywhere. The tingling and burning is not painful. My hands cramp up at times and I need to flex them often. No pain though. Throughout the day I have a slight cramp/dull pressure in my calfs. I noticed weakness in my right arm and slight atrophy. Almost like dents in my muscle that I know we're not there a month ago. I can still grip strongly and my strength seems ok. If anything, I've gained muscle in my arms from all the ALS strength tests I put myself through everyday. Is having hyperactive reflexes a sign of umn? I've read it is. I'm trying to stay positive but I am filled with so much anxiety everyday. I know my body and have been healthy for 31 years until now. I have a lot of fibromyalgia symptoms but with no pain though. It seems I have all the symptoms of ALS though and it's impossible to be optimistic. I have an appointment at one of the best hospitals in the state next month. Hopefully another emg will be more helpful since I've started having weakness. I'm so scared and just got engaged this last Christmas. It's hard waking up to do the same worrying everyday and knowing that I have the start of something that can't be good. All other blood work and tests have been normal as of a month ago. Thanks for reading if you have.
 
why did you start a new thread?

You say you have weakness and then you say your strength seems OK.

Sounds like you need to just be patient and let the doctors do their process. We can't really do anything or add anything from here just by reading some text you write.

You are convinced it is not fibromyalgia because you lack one symptom, and yet you are terrified it is ALS when you don't have typical ALS symptoms either?

You are scared and you are waking up worrying. Maybe you need to go back and discuss this particular symptom with your doctor, rather than expecting we have some magical answer? Remember it took time, months, sometimes years for us to get a diagnosis, and during that time it is best to just let it be and live life to the fullest. Worrying and scaring yourself won't change the diagnosis or outcome, but will make the path to getting the diagnosis hell for you and your new fiance.

I sincerely hope you find the answers with your doctor.
 
Not to be harsh but what part of "tests came back normal" eludes you? As "affected" noted above, there are no magical answers here and frankly speaking, most of us would trade symptoms with you in a heart beat.
 
where did you receive the training to properly interpret the results of your daily ALS strength testing? What tests are you performing and how are you gauging your performance?
 
I honestly feel your pain I dont have ALS either but am terrifiedddddddddddddddddddddd ive had the falcitations for a month now, left arms and leg hurting...they feel like they're weak but 4 pcp's and 2 neuroligists said they arent. I have a nerve test coming up on the 6th. I have asked all my doctors about ALS they said no no no. I wont be satisfied till the answers come back from the nerve test though. ALS is something that people find out about through google and it sticks in your head. I did get diagnosed with fibo 2 weeks ago, and my neuro thinks i have carpel tunnel in my arms. soooooooo ask your doctor about fibo, anxiety and BFS =)
 
("I have asked all my doctors about ALS they said no no no.") Ok, what's your plan after you get the fourth "NO"?
 
Why do you not trust what your neurologist said? I wish to high heaven my neurologist had said that to me.
 
say it again ... amen!
 
ALS has one set of demons but I'm not sure they are worse than the ones you are living with. After your 4th no I predict you will still be here;terrified and hoping unless you get some help
 
Re: Scared it's ALS and now MORE SCARED

I am starting to have progressive weakness mainly in my right arm and noticing muscle loss and slight atrophy. I am still pretty strong but I'm starting to fumble little things when it comes to using my fingers. I do have very brisk reflexes which were just noted by my neurologist. I can just touch my deep knee tendon and it goes flying. I've read that people have symptoms for years before diagnosed. My EMG 3 months ago was normal I was told. Wouldn't that EMG have picked up something? I had the EMG before the weakness and muscle loss, which all this has happened in the last 2 months. I know it's so rare but I'm a natural researcher. I've spent hours upon days reading and researching this disease as well as others that mimic. Every symptom from upper to lower motor neuron leads me here. Thanks.
 
I am starting to have progressive weakness mainly in my right arm and noticing muscle loss and slight atrophy. I am still pretty strong but I'm starting to fumble little things when it comes to using my fingers. I do have very brisk reflexes which were just noted by my neurologist. I can just touch my deep knee tendon and it goes flying. I've read that people have symptoms for years before diagnosed. My EMG 3 months ago was normal I was told. Wouldn't that EMG have picked up something? I had the EMG before the weakness and muscle loss, which all this has happened in the last 2 months. I know it's so rare but I'm a natural researcher. I've spent hours upon days reading and researching this disease as well as others that mimic. Every symptom from upper to lower motor neuron leads me here. Thanks.
 
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