Old 07-22-2016, 06:21 PM #1
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Default 28 years old and no idea where to turn.

These symptoms started in December of 2015. I had my daughter in March of 2015. Since then I've had a slew of tests and symptoms. They started by ruling out my heart, then my lungs, and now here i am July of 2016. My entire body feels as if Iran 6 miles and my muscles are aching and they feel exhausted. It's like I can feel them working even typing this message. I do have muscle spasms daily, but they're not too bad. It's the weakness that Bothers me the most. It feels like I can't do it but if i force myself I can. I came across als while on Google and researched it a bit problem is my symptoms could be so many things. My first neurology visit is on the 3rd of next month. I'm terrified it's als. Any thoughts, suggestions, or stories would be appreciated. Thanks
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Old 07-22-2016, 07:19 PM #2
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Default Re: 28 years old and no idea where to turn.

Make sure you get a good Lyme Disease test.
Doesn't much sound like ALS. The Neuro should be able to calm you.

Finally: read the Sticky post titled PLEASE READ BEFORE POSTING.
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Old 07-22-2016, 07:49 PM #3
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Default Re: 28 years old and no idea where to turn.

Definitely not how ALS presents.
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Old 07-22-2016, 07:59 PM #4
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Default Re: 28 years old and no idea where to turn.

It doesn't sound even remotely like ALS.

Ask your doctor about fibromyalgia
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Old 07-22-2016, 09:10 PM #5
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Default Re: 28 years old and no idea where to turn.

Sorry guys. I didn't realize there was different threads for different things. I've heard fibro by a couple people. I think the thing that scares me is how my hands are, they cramp up so easily. But reading the internet it can convince you that you have every disease you read about. I've learned asking those who experience it is the best route. How does this disease start? Thanks for the advice everyone!
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Old 07-22-2016, 09:24 PM #6
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Default Re: 28 years old and no idea where to turn.

Quote:
Originally Posted by Jai06 View Post
How does this disease start?
Do you realize that you're asking people who are paralyzed and type with one finger (as I am doing now) to take the time to educate you?

It appears that you can use Google, so search on "ALS Association'.

Bye!
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Old 07-22-2016, 10:02 PM #7
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Default Re: 28 years old and no idea where to turn.

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Do you realize that you're asking people who are paralyzed and type with one finger (as I am doing now) to take the time to educate you?

It appears that you can use Google, so search on "ALS Association'.

Bye!
I didn't mean to offend you!! I apologize.
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Old 07-22-2016, 10:03 PM #8
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Default Re: 28 years old and no idea where to turn.

Quote:
Originally Posted by ARACHNOIDITISORALS26 View Post
I strongly suggest you read my reply....it is way more likely than a blanket diagnosis of fibro.
I didn't have an epidural I do have degenerative disc disease. I will definitely ask the doctor about it. Thanks
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Old 07-28-2016, 05:18 PM #9
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Default Re: 28 years old and no idea where to turn.

Quote:
Originally Posted by Jai06 View Post
These symptoms started in December of 2015. I had my daughter in March of 2015. Since then I've had a slew of tests and symptoms. They started by ruling out my heart, then my lungs, and now here i am July of 2016. My entire body feels as if Iran 6 miles and my muscles are aching and they feel exhausted. It's like I can feel them working even typing this message. I do have muscle spasms daily, but they're not too bad. It's the weakness that Bothers me the most. It feels like I can't do it but if i force myself I can. I came across als while on Google and researched it a bit problem is my symptoms could be so many things. My first neurology visit is on the 3rd of next month. I'm terrified it's als. Any thoughts, suggestions, or stories would be appreciated. Thanks
×update .. lymes tested negative, MRI or brain was normal, symptoms have gotten worse, now I'm dropping things and muscles are weaker than before. Primary doctor thinks fibromyalgia, but wants neurologist to make a diagnosis. They're going to do an MRI of my C and T spine, and an emg. I'm so scared. Thanks for your time everyone.
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Old 07-28-2016, 06:22 PM #10
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Default Re: 28 years old and no idea where to turn.

Thanks for the update. Good luck.
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Old 08-02-2016, 11:16 AM #11
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Default Re: 28 years old and no idea where to turn.

XxupdatexX

Neourologist visit tomorrow. Im very nervous but ready to find out what this is. Waiting is the worst part.

Symptoms have increased again, having trouble walking up stairs, arms fatigue very easily, sensation of something stuck in my throat, pins and needles, severe fatigue, loss of coordination in hands, and this strange vision change, almost like i can't focus, like im living in a dream state.

I still fear ALS, but in my mind i know its most likely something else. Ive started therapy to help with the anxiety of all this. Therapist feels once i know what is plaguing me my anxiety symptoms should slowly dissipate.

Will update with what neurologist thinks. Thanks for your time.
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Old 08-06-2016, 06:35 PM #12
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Default Update.

I had my neurology visit, it was a long one. I am showing muscle "tightness", that she is putting me into physical therapy for. She is also checking me for MS, and doing an EMG to rule out ALS.

This is a hard situation to "wait out", MRI will be on the 15th but EMG couldn't be scheduled until the 7th of next month. Waiting is definitely the worst.

She said although I show vague symptoms of ALS that it isn't in her top diagnoses for me. She is thinking more along the lines of MS, fibromyalgia, rheumotological, with "migrains" (which I thought were just headaches, but turns out that term is a very wide margin in symptoms). The only reason she is ruling out ALS with EMG is due to muscle tightness and my decrease of range of motion.

My symptoms have basically remained the same, only a few have gotten worse. Breathing seems to be harder, feels like someone is hugging my rib cage, feels like my throat is always tight, "muscle weakness" seems to be more pronounced. But it seems to have good and bad days. (Which I read in sticky isn't indicative of ALS), stiffness in the morning or after sitting is horrible, and the muscle spams suck.

The only new symptom is how i speak, it isn't slurring, it's cognitive. It's like I can think what I want to say but what i day is completely different. At first people thought it was kind of funny, like an occasional mess up of words. But as the days go it gets worse.

** only positive diagnosis is sleep apnea, diagnosed yesterday. Many more lung tests to come.

Fear is a horrible thing. I fear this and hope for my daughter's sake we can figure this out soon .

Thanks for listening everyone.
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Old 08-06-2016, 08:17 PM #13
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Default Re: 28 years old and no idea where to turn.

If you treat your apnea with PAP, you will likely feel better at least on the cognitive front and possibly the tightness. I'm not saying that's all that's wrong, but it is a positive step.

Best,
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Old 08-06-2016, 08:21 PM #14
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Default Re: 28 years old and no idea where to turn.

Yes ma'am. That's one positive note. At least we know why i have a hard time sleeping, getting rest, and waking up tired.

One step at a time.

Thanks for your time
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Old 08-24-2016, 10:28 AM #15
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Default Re: 28 years old and no idea where to turn.

Update

MRI of neck was good.
Muscle enzymes were within normal range.
I have started physical therapy for the tightness and knots in my muscles.

I guess the question i have now is did anyone feel pain or stiffness when it started?

My right foot and right hand are so hard to use. Stiff, painful and no coordination.

Emg on the 7th.
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