bulbar als fears [Archive]

melfish

27-07-17, 20:42

Hi. I'm new here. 49-year-old female with a fear of bulbar ALS so severe, it's basically crippling me. I can't eat or sleep. This all started 10 weeks ago when I noticed the tip of tongue was slowly moving up and down on its own. This observation triggered a panic attack so severe, I ended up in the ER.
Since then, of course, I've been intently studying my tongue, and it quivers and twitches at rest and when extended. I've also noticed asymmetry and deviation when poking it out.
I now feel like I'm slurring and having trouble swallowing, but of course this may be anxiety. Yesterday, I noticed that my uvula deviates to the left and my soft palate is asymmetrical too.
ARGHHHH. I know how rare ALS is, and that bulbar ALS is rarer still, but I can't help freaking out.
I did have health anxiety really bad in my 20s, but I thought I'd put that crap behind me. Please, does this sound like ALS?

Fishmanpa

27-07-17, 20:48

Please read this... (http://www.nomorepanic.co.uk/showthread.php?t=196071)

Positive thoughts

melfish

27-07-17, 20:53

Thanks, Fishman
I've read that, but it's not alleviating my fears, mainly because of my age, I think. If I were 20-something, I'd be very relieved by it, but at almost 50 ...
When I was in the ER, the doctor said he'd not heard of any neurological disease presenting that way and sat there beside typing "twitching tongue" into google and having the AUDACITY to tell me there were no matches! ALS is the first thing that comes up! I guess he was just trying to ease my panic attack, but honestly ...

Fishmanpa

27-07-17, 21:00

Read this a few times ;)

Speech and swallowing issues

Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!

Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our DIHALS visitors. Please look up globus and learn that it is a very common complaint especially among the stressed

Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop!

Positive thoughts

melfish

27-07-17, 21:04

Ha, I have the excess saliva too :yesyes:

Seriously, even though statistically the odds are slim, PEOPLE STILL GET IT. And having health anxiety isn't a magic pill that somehow protects me. Hypochondriacs get sick too! Why shouldn't it be me?

I just can't find an alternate explanation for this cluster of symptoms. It just fits bulbar ALS :weep:

Fishmanpa

27-07-17, 21:10

Ok... well good luck. I hope you find some relief from your anxiety :)

Positive thoughts

melfish

27-07-17, 21:15

Thank you for taking the time to reply :)

melfish

28-07-17, 01:25

Does anyone know if twitching and quivering of the tongue can precede slurring speech? I feel like I'm often mispronouncing consonants, in particular.The twitching started (or I at least noticed it) two and a half months ago.

Fishmanpa

28-07-17, 01:35

melfish

28-07-17, 02:08

Thanks again, Fish. I can only imagine how frustrating posts like mine must be, but when you're in it, it's all-consuming and logic is the first casualty. (I'd not dream of posting on an ALS forum unless I were at least in the diagnostic process)

AntsyVee

28-07-17, 05:31

Read this thread... (http://www.nomorepanic.co.uk/showthread.php?t=199888) And search out some of the other ALS threads here. The pattern is quite similar and no one has it. In fact, in the several years I've been here, I've read dozens and dozens of ALS posts and no one has it. Just stay off the ALS forums and please don't post there seeking reassurance. It's disrespectful to those suffering.

Positive thoughts

I also recommend that thread. Every week there is a new person on here who thinks they have ALS. (This is not to make you feel bad; there is also a new person on here every week who thinks they have HIV, rabies, SFI, hantavirus, schizophrenia, brain eating amoeba, etc.) None of these people ever have had it. Not on this forum, or another one I used to be on for years. For some reason, people with health anxiety OCD seem to latch on to the most rare and obscure diseases. It's just the nature of OCD.

melfish

28-07-17, 15:24

Intellectually, I know this. But I still can't get past that the symptoms appeared FIRST, then I googled ... Not the other way around. ALS wasn't even on my radar until my tongue started doing its thing. And then it was another two weeks before I googled the symptom and came across bulbar. Although I was concerned about a neurological condition in the interim. It was my first thought when the first symptom cropped up :blush:

AntsyVee

28-07-17, 16:05

The thing is though there are many bodily symptoms that just happen, with no sinister illness or conditions behind them. Your job will be to accept these bodily quirks without going straight to Dr. Google to look for a diagnosis. You will know truly when something is seriously wrong. You don't need to be hyper vigilant; you won't miss something big. These are the truths that we all must accept.

melfish

28-07-17, 16:16

Wise, wise words. And that's how I look at it too, in my more lucid moments. I wish I could just hold onto that frame of mind. But my brain keeps defaulting to the "what ifs?" What if I've noticed it at a really early stage, that most people overlook? What if this is how it starts, with subtle twitches and quivers? Which I guess translates to, What if I let my guard down and JUST BE? What if I relinquish my need for control?

Fishmanpa

28-07-17, 16:41

What if I relinquish my need for control?

Control and the lack thereof is the core of HA and anxiety IMO. As far as ALS? It's about "failing" not "feeling". It's not about feeling weak, it's about actually not being able to do something anymore. So if one day you pick something up and it falls from your hand or your arm feels a little weak... no big deal. If you try to pick something up and you can't do it no matter how hard you try, yeah... that's something to have checked out!

Positive thoughts

AntsyVee

28-07-17, 17:11

Anxiety, no matter what form, is all about control. The hardest part about healing is accepting we have no control.

When I first got PTSD, I tried to control everything. It was like, "OMG, something bad happened and I wasn't prepared for it, but now I have to be prepared for something bad!" I would call my almost 70 year old dad and make him check in with me and I didn't want my husband leaving the house. Then I would freak out because they were home and what if something happened to them there...after all my buddy was killed at the home. But I can't control any of that, and trying to wore me out and made my family feel suffocated. All anyone can do is think positive or say a prayer (if you're religious) and move on. Do I still have bad days? Yes, but I recognize my issues now.

melfish

28-07-17, 18:32

I wouldn't be surprised if there was an element of PTSD at play with me also. I am adopted, and adoption theory states that it is the most fundamental and deep-rooted of all traumas, the separation of baby from mother, and that it is hardwired into the infant's brain. I have TERRIBLE separation anxiety and worry all the time about something happening to loved ones. (It doesn't help that my husband is a lineman :/)

AntsyVee

29-07-17, 00:36

So have you been to therapy? I don't know anyone who's successfully made it through PTSD without some form of therapy. It's a must.

melfish

29-07-17, 00:49

Not specifically for that, no. I've tried a few adoption counsellors over the years, but not made much progress.

TinkrTonkr

29-07-17, 08:00

I feared bulbar Als in the past so I know about it. When your tongue starts twitching it means it's very weak or paralysed already. People with ALS start slurring REALLY bad, sometimes they are not understandable before their tongues twitch. Also the twitches in ALS can't be felt and look like a bag of worms. About the swallowing issue it's liquids that get hard first, you start choking when drinking, and it isn't a one time occurrence when it starts happening it happens constantly getting progressively worse. Look I can't tell for sure you don't have als but I hope I helped and hope you don't have it. You almost certainly don't. Only 1/200000 get bulbar every year and they're usually older, mean age of onset for bulbar is 60 +/- years

Josh1234

29-07-17, 14:40

"Yesterday I noticed that uvula deviates..."

Oh, you just "noticed" eh? You mean you weren't relentlessly body scanning for symptoms?

Twitching is not ALS. You aren't slurring, nor having trouble swallowing. My tongue twitches every day.

melfish

29-07-17, 15:07

Thanks, everyone. Even I know I sound irrational. Normal people don't body scan. They don't borrow trouble. I get it. But when you're in the thrall of HA, well, it's hard to remember that. Also, there's that little voice going, "Yeah, but what if you're RIGHT?"

---------- Post added at 07:07 ---------- Previous post was at 07:05 ----------

(Josh, I can't feel the twitching. Just see it. My tongue does it at rest and when poked out)

AntsyVee

29-07-17, 17:19

Yeah, but so does my tongue. I just tried it right now. And I don't have ALS.

melfish

29-07-17, 20:25

My only response to this is a "Yeah, but ...", so I am going to refrain :shades:

---------- Post added at 12:25 ---------- Previous post was at 11:07 ----------

I just ate an English muffin and had to swallow twice to get each mouthful down. And then I ended up with that "stuck in the throat" feeling ...

nivekc251

29-07-17, 21:19

You are hyper aware of your tongue mouth and throat. You are feeling normal sensations & attributing them to ALS. The tongue constantly twitches so ignore that. When I was at my worst with this anxiety food would go up in my nose and get caught in my throat, because I was so hyper aware and it made me tense up and swallow differently. Trust me if you had bulbar ALS you wouldnt be on this forum trying to convince people you have symptoms. You need to calm down and tell yourself that today you are ok and you are going to enjoy today, and go from there. ALS is not latent you wouldn't be able to swallow at all or you couldn't pronounce words at all. The only way to get over all of this is to ignore it.

AntsyVee

29-07-17, 22:43

The only way to get over all of this is to ignore it.

Or read self help books. Or journal. Or get therapy. Or exercise. Or take meds. ;)

melfish

29-07-17, 23:54

Thanks, guys. You make some great points. I decided to distract myself by going to the movies. Dunkirk was probably not the best choice :/ Good grief, that was harrowing

melfish

30-07-17, 16:44

I reread what you wrote, nivek, and that makes a lot of sense. I'm going to try that today :yesyes:

tryingtosurvive1

01-08-17, 07:34

There's a wide world of benign tongue twitchers on the internet.
Really. There's a whole archive of posts by benign twitchers and a lot of them have tongue problems.
Unless people are telling you that you sound drunk, don't worry.

vincy

02-08-17, 06:05

Hey melfish. How long have you had this feeling that you're mispronouncing consonants? I think our (perceived) problems are very similar xP

melfish

02-08-17, 16:33

Hey Vincy

Surprisingly enough, only since the tongue twitches started (or rather, that I noticed the twitches/quivers. I can't feel them) :whistles: I feel like I'm tripping up or not enunciating correctly or my words are running into one another, especially with consonants.

Zomboy

02-08-17, 21:42

melfish

02-08-17, 22:31

Thanks for chiming in, Zomboy. It's enough to drive you mad, isn't it? I'm taking reassurance in the fact my husband's not said anything. I'm sure if he heard a slur, he'd mention it to me

MyNameIsTerry

03-08-17, 01:32

Hey melfish

I had the exact same thing two summers in a row, I thought I was miss pronouncing words constantly, I was asking people if I sound right even record myself numerous times a day with my phone to check how my speech was.
Believe me I know how you feel about that speech thing, and I honestly think it has to do with being hyper aware.

It hasn't happened for me in a while and it will pass for you as well.

Hyper awareness sounds right. That and Confirmation Bias.

Whilst mine anxiety doesn't care about this or that disease I still have had plenty of things I see on the HA forum. I can remember thoughts about "how do I create a thought" or "am I talking properly" and even "how do I move this arm".

It's surreal to go through it all, you wouldn't think it would do this. I guess we start if with a generic view of what anxiety should entail and often find out it's a much bigger weirdness than we could have imagined!

melfish

03-08-17, 01:59

It's surreal to go through it all, you wouldn't think it would do this. I guess we start if with a generic view of what anxiety should entail and often find out it's a much bigger weirdness than we could have imagined!

Yes, and that's why my mind goes straight to a disease process, because it doubts that anxiety could be behind all these disparate symptoms