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JaseFace

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Sep 28, 2014
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Learn about ALS
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US
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Wisconsin
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Milwaukee
Hello all,

I am a 25 year old male. I have read the sticky and browsed through a decent number of other threads here. I try very hard not to consult Dr. Google as it causes unnecessary worry and won't make my symptoms better. However, I have to wait over a month for a neurology appointment, and my GP is at a loss as to what is going on.

I do not want to bother any of the regulars around here who have to continually deal with people immediately assuming they have ALS, but I've read enough conflicting information on the disease and on my symptoms that some insight would be welcome.

Rather than posting a long narrative paragraph, I'll just list my symptoms below. I have been experiencing these for a little around 2 months now:

-Tremors and twitching in my arms and legs. My limbs will also occasionally jerk suddenly, but just once, and just one limb at a time.

-Numbness in my hands and lower arms, occasional paresthesia.

-My head is falling forward, for lack of a better description. I can maintain it upright when I focus on it, but it is naturally falling down towards my chest, which it never used to do. This is true whether I am sitting or walking.

-Issues with swallowing and speaking. This was actually the first symptom. I can get food and liquid down, but my throat feels tight, and my swallowing does not feel normal. I also have an extremely over active gag reflex, though the severity of this varies. I will occasionally gag repeatedly for no reason whatsoever, just while breathing, or while talking. My speech follows a strange rythm, I will forget words and proper sentence structure, stutter, slur or trip over words...my voice will also become hoarse, as though there were uncleared mucus in my throat. I feel as though I'm not getting enough air at times, though I may be psyching myself out with that one.

-Fatigue, yet difficulty sleeping for longer than a few hours

- Balance problems while walking. Not to the extent that I fall over, but I have noticed myself drifting one way or the other. Feelings of weakness in my legs while walking.

I have had a CT scan, as my GP suspected a brain tumor. That came back clean. I then had an MRI, as he thought it might be MS. That also came back clean (Though it was done without contrast,making it less accurate which I was a little annoyed about.) Both of those tests did show something abnormal in my sinuses- I was prescribed an antibiotic. As I have not had follow-up tests, I do not know if that was effective. I have no family history of Huntington's Disease. My GP does believe something is wrong, but he was pretty frank in saying it's out of his league as a family doctor.

I simply do not know what this could be, other than something obviously neurological. I suppose it is unlikely to be ALS, as many of these symptoms vary in their intensity day-to-day, and even in different times of the day, which appears to not happen with ALS symptoms...

Any thoughts you all might have would be welcome. Thank you in advance.

-Jason
 
You say you simply don't know what it could be. Well, guess what? We don't know either. Why? Because, we aren't doctors. Then your family doctor says it's out of his league to figure it out. So, you come on hear and ask us ? Most of us don't have a medical degree either. So, why are you wasting our time. Did you read all the stickies completely? That's all we can offer you here. You may have something going on but it's not ALS. But, it is my opinion and then I'm not a doctor is that you need to see a qualified psychiatrist because your problem lies in that category. Also, I'd recommend staying off of Dr. Google and to log off or our site. You have nothing that sticks out as saying ALS.
 
I wrote a longer post but it went to moderation. Let's just say I'd recommend a psychiatrist.
 
I apologize if I somehow offended you.
 
For what it's worth, I have been seen by a Psychiatrist, and he repeatedly emphasized that these symptoms were physical, not mental.
 
That could very well be true. But, you aren't presenting symptoms of ALS so you still don't belong here. Have your regular doctor refer you to a specialist then for further testing. Don't ask us who aren't doctors to figure out what is going on.
 
Hi Jase,

having carefully read your post I would say that there is a mixture there of something going on and anxiety. Anxiety is so difficult because it will enhance symptoms and even create new ones.

The waiting for appointments is very hard, we all went through that.

All I can suggest is that you try to find something positive to focus on whilst waiting. Your symptoms don't really sound like ALS, but I think that a neurologist is the right person to be referred to at this point. If it were ALS, getting a diagnosis early is no bonus. There is no cure, and it is terminal. This means, live in hope now, it could be, and in fact is highly likely to be, something that can be treated, and whatever it is, over another month it will reveal itself more.

Try to leave the internet alone. Reading something does not make it correct, and interpreting medical stuff you read without medical training is dangerous.

Let us know after you have had a diagnosis from the neurologist, and in the meantime maybe go back to your doctor and discuss your anxiety and see if you can get some help for that.

All the best
 
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