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hina

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Gooooood morning everyone!
I hope I'm not bothering you guys, but I have a simple question. My neuro said all my symptoms are stress related (after a quick, clean emg a month ago), and I should forget about all this. I still want to figure out why my body feels this way. I don't know what the next step is. Do I go back to my regular doc? any doctors can oder blood test for autoimmune diseases? My cpk level's been normal( on the low side) and does that mean they think my muscle are fine, and I don't need to see a neuromuscular speacialist? any advice?

I've been having left arm/shoulder ahces(w/perceived weakness), left thumb stiffness, right lower leg pressure around my knee and discomfortness, body/tongue twitching, tongue stiffness ( I finally figured out how to describe my tongue situation----it's like after you had cold ice cream, your tongue kinda freeze and you can't pronounce some words correctly),pressure in my jaw come and go. all these slowly progressed, for 5months now. thank you and have a lovely day.
 
Hi Hina--

I would recommend following up with your regular doc or a general neuro. My experience with ALS docs is they generally have two diagnoses: ALS or not ALS. Once it's deemed, "not ALS" it's not really their concern to figure out what it is. That is an oversimplification I know, there are many who will try to point you in the right direction or keep working with you, but generally their job is to work with ALS patients. If you're not an ALS patient, you should be seeing someone else.

You should follow up with other docs to see what's going on. Vitamin deficiencies, neuropathies, spinal issues, autoimmune disorders, etc. There are TONS of things that could be causing your symptoms, and you should try to get to the bottom of what it is to see if can be treated.

That being said, somethings just can't be easily diagnosed and you may never have an answer. That's sort of where I am now-- I've been told plenty of things that AREN'T causing my problems, but no one knows for sure what it is. Many people just live with undiagnosed neurological conditions, and as long as it's not super-debilitating, we have to accept it and move on.

Best of luck,

Andy
 
Thank you very much, Andy and Hal for your time!

He's a general neuro who performed the emg on me. I haven't seen an ALS doc yet.
ANYWAY, I got to talk to my neuro over the phone earlier. I told him my tongue started twitching about a week ago. His first
respond was "hummm, humm...." He really sounded puzzled like i'm not supposed to have it. He told me to give it two weeks.
It should go away in two weeks, and if it doesn't I MUST come in and see him. umm...If it's benign then it is benign. Benign also
mean short and temporary? I see so many ppl here who's been twitching for years and years. They've had it for years and
they are still fine. He sounded like I'm in big trouble if it doesn't go away in two weeks. IS TONGUE TWITCHING THAT BAD?
I don't understand why he said it that way. Mine's small twitches not bag of worm movement. He also told me I could be slurring
because of the twitching? I thought slurring caused by tongue weakness cuz they don't move properly. He ruined my afternoon.
My parents just spent $650 for some chinese medicine. the bitter liquid stuff although I don't believe in chinese medicine. They just
think I'm weak over all. I want to get better. So far my slurring(5th day) come and go and it's very subtle. Could slurring change every hour or day by day? Also anxiety could cause slurring temporarily? I have bad migraine that sometimes cause jaw stiffness. Jaw stiffness
can cause tougue stiffness which causes little slurring? I'm KINDA freaking out. Help.
 
Hello!
should I be worried about my tongue twitching? like my neuro feels?
I seem to mispronounce some words now. Is it in my head? so far it's very subtle, but
I can "feel" and "hear" it when it happens.....:-( everyday now...
I had no "clinical" limb weakness although my symptoms started in my left arm and hand 5months ago. My emg(a month ago) was normal but not done in my tongue. If I'm starting to have bulbar symptoms too, isn't it too fast? Am I not supposed to have some damage in my limb first? some significant clinical damage before it moves on to bulbar? somebody help me to feel better please. negative or positive, I'll take both!
 
Hina-- first off, take a deep breath... anxiety can definitely cause speech problems and slurring. Seriously. Secondly, if you're twitching for more than two weeks, that certainly doesn't mean it's not benign. I generally think people who are super worried about this stuff should stay away from the internet-- google, forums, etc because there's so much info out there and not all of it is correct, but if you want to discuss this stuff, you might be better off in the BFS (benign fasiculation syndrome) forum. I can tell you that MANY MANY people on those boards have twitched for YEARS, some of them even decades, and they are fine. Also, tongue twitching is very common there.

There is some info out there that tongue twitching is somehow worse than twitching in your hands, face, legs, etc. I'm not 100% sure where this idea comes from, and there may be some truth to the fact that it's more suspicious, but it is just another muscle and I promise you that I've spoken with dozens of people who have had tongue twitching and are just fine. Some are on these boards, some are on the BFS boards. I'm one of those people-- I get tongue twitches, but I've had 3 clean EMGs and I've been getting symptoms for almost 3.5 years and I'm still fine. Tongue twitching and no ALS.
 
The major cause of muscle twitching is stress and anxiety. You sound very stressed. You do not know what is wrong but you are choosing to 'horribilize.' It is a choice. 2 months ago I was diagnosed with a motor neuron disease. I was unaware of any symptoms. Does that mean that anyone out there with no symptoms that they are aware of has this disease?

One reaction to a doctor saying that you should see him in 2 weeks would be to feel relieved that he is conscientious enough to follow you up. It is a huge leap to jump to the conclusion that you have this disease because of that phone consult.

Your biggest problem right now is fear - fearing something that may never be. That is exhausting. It is a waste of time and energy and can only exacerbate your symptoms. Try to stop scanning your body. Get pyschological support like a counselor. Whether you have a disease or it is due to anxiety, you need relief.

What will be will be.

I wish you the best.

Northern Dancer
 
hina, you can't get much more bulbar onset ALS than me, no speech, no food or drink and I have never had a tongue twitch and have never had an emg of my tongue. My symptoms started with slurring and it was noticed by my wife before I heard or felt anything wrong.
 
Thank you again.
I feel better about my tongue twitching. Even my healthy husband tells me he occasionally gets tongue twitching too. I know he's not lying because his body jerks and twitches more than mine at night as he falls asleep. I witnessed it many many times. So I would care less about the twitching. Now I'm still slurring tho. Right now my tongue feels fine and light, but it comes on whenever it wants throughout the day and night with pressure/stiffness in my tongue(that's how I'm able to feel it coming on.) and I would start mispronouncing words. Is this how the slurring start first? and then
it slowly gets worse every day? I don't wanna sound crazy but slurring really worries me. It's been 6days now.


Are there many ppl out there who experienced slurring as a result of anxiety and later it went away? I'm grateful for another lovely day. take care guys...:wink:
 
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