I can’t sleep I’m so stressed about this

AddytheGlady

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Alright I guess here I am. I wanted to take a moment to thank all of those who have been diagnosed with ALS for replying to my most likely annoying questions. I am sincerely sorry if I offend or trigger anyone. Much love.

I am a 24 year old female who lives in Oregon. About 2 years ago I started feeling very unwell. Tired. Stiff. Aches. Joint pain. And just felt like I was fighting the flu all the time. A year later I went to the doctors and they ran a few tests which came back to show I had inflammation somewhere in my body. My primary thought it could be lupus or an autoimmune problem since autoimmune issues run in the family. She refers me to a rheumatologist where they basically ride it off and say I don’t have an autoimmune problem. Around 3 months after that appointment I started getting an eye twitch. It was persistent. I got it all the time and it wouldn’t go away. Then, I started noticing that my upper right arm was twitching. It wasn’t a bunch of small fasciculations, just a small spasm. Then it moved to my left arm and I started getting muscle spasms. Then I started getting them in my chest and in my stomache and butt and legs and toes. Like what the heck?

First question: Does ALS cause spasms all over like that? Especially in the stomach and butt area?

This is where things started getting weird. My left arm started feeling tingly and off. Almost like my arm wasn’t mine? I could use it fine. I have no actual weakness....I think? I do notice that my left side (which is my less dominate hand) is weaker than my right hand. But, I can use it. Rarely dropping things. Not too clumsy. Whatever. Then my left leg started feeling tingly and weird as well. The stiffness continues and I still experience spasms. My arm and Joints will also click a lot and pop.

I get brain ZAPS, head pains, jerking movements where my body will just randomly jerk. I do find that my muscles tire easily. They work as far as I can tell, but they tire. I suffer from acid reflux as well as forgetting to breathe as I’m falling asleep. What is this?

question two: I have been having muscle spasms for about 5 months now. If I had ALS would I have already been experiencing some muscle atrophy and weakness?

My father in law recently passed away from ALS. I was his caregiver
 

affected

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I'm so sorry about the loss of your FIL.
I'm sure you know that his symptoms don't match yours.
Please read here carefully and keep working with your doctors. I just can't see a thing of ALS in what you are describing.

 

AddytheGlady

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Joined
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Lost a loved one
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12/2019
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Scappoose
Hello I posted on here early describing some of my symptoms. and I feel like I’m developing more issues. I am very unsure as to what these issues mean but it’s starting to scare me. Basically I started experiencing a muscle twitch in my eye about nine months ago. That muscle twitch then went to my right arm and then left my right arm and went to my left arm. Then I started experiencing muscle twitches and spasms in my legs back stomach chest throat and even fingers. I have suffered from muscle stiffness for years. Particularly in my legs. But now I have muscle stiffness in my arms. I am not sure if I actually have muscle weakness because I’m still able to do everything that I normally Can do the difference is that when I do things they seem laggy? It feels like my muscles are extra tired even though I’m able to perform. When I also check my knee reflexes both sides are hyperreflexive.My knee reflexes are crazy. And I have been experiencing tingling sensations and pain. I got an MRI and it came back clear. So they don’t think that it is MS. Although when I test the Babinski sign it shows up as negative. How can I have a negative Levinsky sign but a positive hyper reflexive knees? I’m really scared about actually developing muscle weakness. At this point I can still “use” all of my muscles they just hurt and are stiff. Another new symptom is that my muscles seem to “vibrate” when I flex certain muscles. If I flex my hand down towards my arm the wrist and forearm will vibrate. Same with my shoulder joints and thigh muscles. You can visually see the muscle like vibrating and almost “skipping”

rundown of symptoms:

muscle twitches and spasms EVERYWHERE
Stiffness in arms and legs (started out in legs)
Hyperreflexive knee reflex
Vibrating muscles
Tingling and pins and needles
Occasional numbness
Achy pains “growing pains”
Tired muscles
Internal tremors and vibrations
random jerking of foot or limbs

Please tell me what you think this could be?!
 

ShiftKicker

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Hi there- I've moved your post to your already open thread. Have you read the thread Tillie posted for you? It goes over a few different things and explains about sensory issues pointing away from ALS and usually indicating some other issue. You will also see a list of just some of the things that cause similar issues.

It's also important for you to visit with a doctor instead of asking folk about what your symptoms might mean- we really try to leave to diagnostic stuff up to a doctor. It's not really clear if you've visited with a doctor or not, so this should be your first step.
 

affected

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The link I gave you already gives a long list of possible things that could be wrong.
The fact you did not stay in your original thread tells me it is unlikely you even opened that link.
Please realise we are not doctors, but terminally ill people or their carers. Yet we took a lot of time and effort to create the information in that link I gave you. Please read it carefully.
The appropriate place for you to ask these questions about your vague minor symptoms is a doctor who can examine you, just as Shiftkicker has indicated. I do wish you all the best.
 

lgelb

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There are numerous possibilities here, including nothing at all. So we cannot answer your last question as fully as a doctor examining you can. What we can say is that this doesn't sound like ALS at all, but I encourage you to seek out a physical medicine specialist and explore the possibility that physical therapy could improve your issues.

Best,
Laurie
 
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