Losing Hope, bad symptoms.

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Hello and thank you for letting me post in your forum. I am in a very bad place, with some very scary symptoms. I'm hoping some of you may shed some light on what is happening to me.

About two months ago, I started getting violent fasciculations in my entire body. This worried me for a moment, though I'm not a really anxious person and I know typically this could mean nothing. So I carried on.

However, about 1 month later (3 or so weeks ago), I started slurring my speech ever so slightly one night. Again, figured this was nothing and it would go away. I was wrong, this has progressed over the last three weeks, I am to the point where holding a conversation is difficult, as I mispronounce many things, as if my tongue and lips and jaw are slipping up. I'm also to the point where certain phrases, no matter how many times I try to say them, I am unable to without slurring or having to go extremely slow. After speaking all these muscles just feel tired. I am avoiding speaking to anyone because of how difficult it seems lately, though I experience no pain in my jaw in any way.

Took this problem to my doctor, a very smart man. I am very young (25 years old) and though uncommon, he let me know he'd like me to see a neurologist to run some tests. I was able to run an MRI with nothing abnormal, ruling out MS. But I am now on a 3 MONTH waiting list with a neurologist.

First of all, there aren't ANY benign things that this could be (the dystharia), which is very terrifying. I am already in a very bad spot in life, and won't bore anyone with the details, but it feels like this is moving extremely fast, to the point where I don't know if speaking in 3 months will be a possibility.

Anyone the wiser that could drop a comment would be appreciated. I'm aware of the odds, but the symptoms aren't pointing in many other directions. My doctor seems to agree

 

[Atsugi]

Joe, I wonder why you came to an ALS website. Did your doctor tell you he's concerned about ALS?
As to your dystharia, I count 13 conditions that could cause that, all much more common than ALS.
As to your twitching, you wrote that your twitches were spread throughout your body. That's not ALS.

 

[lgelb]

Joe,
I disagree w/ your conclusion. The speed + severity argues against ALS, in addition to your age. I would be thinking about GB, MG, even Lyme, all kinds of things depending on tests and sx I don't know about. I would think you and your PCP would find a neuro slot closer than 3 mos. out, especially if you're willing to travel a bit. Have you researched the closest neuromuscular center to where you are -- would that be SF? Stanford, UCSF...

Meanwhile, I would see an infectious disease specialist to cover my bases.

 

[[email protected]]

Thank you both for the responses.

Astugi, he's a very good doctor, though yes he did list it as a possibility though not a conclusion. I've ran blood and mri tests ruling out many of the conditions, and have a couple more I'm doing while I wait (IGENEX lyme test for over $1000 out of pocket ). The twitching didn't concern me really as you said, it's full body. Though paired with the increasing speech problems, it's starting to.

Igelb, thank you, does ALS move slower than what I've described? I can still speak, it's just certain things are difficult to say, and it's getting worse slowly, but noticeably. It started very slight and now people can tell. I've read this is how Bulbar progresses, but I could be wrong, I hope I'm wrong. Unfortunately, I've been to two doctors, both not referring me to an actual neurologist but just giving me an Rx and sending me on my way. I've had to call over 20 places and even had my insurance call for me. Unfortunately, this is the earliest I could find.

I really appreciate both of your advice and opinions, and if anyone else has any reassurance that this points away from ALS it would be appreciated. Otherwise, I guess I'll just have to suck it up and wait 3 months while this seems to be getting worse. So frustrating, I'm getting more scared every day.

Thanks again.

 

[Atsugi]

Joe, you can rest quietly while you wait for your neurology appointment; I would be very surprised if you have ALS. Another telling clue is that your doctors are not concerned. So relax.

You might consider traveling some distance to find an neurologist who is familiar with ALS patients at a more convenient date.

 

[GilWest]

Just try to be patient and let the doctors rule out things and prescribe tests as needed. While your symptoms are concerning, if the doctor thought it was something emergent, he would have not let you go home. Even if it Is ALS, there is no point where it can be caught in time and stopped.

Also, ALS does not understand the word "seems", it "does".