Any support I can get ...

[Hyppo]

Hey, I've been off this forum for a while now. I did really well with the anxiety for a while but my symptoms persist and I'm still waiting for a neuro appt.

My biggest issue right now is with my speech. Every time I eat my jaws get tired and lately my tongue has started to get really tired too. Last night it felt like it was about to cramp. The speech sound fine to others but I do have some trouble, as if the tongue was tired. It feels wierd, but the speech is no slow or nasal. No problem with the mobility. I can protrude, move qickly from side to side. The tongue does have two teeth marks on each side but there is no fascis that I can see, at least not when it's relaxed. Mouth symptoms have been going on for four weeks.

Other than that I have the usual complaints of muscle twitches, slight weakness in left wrist, right shoulder/upper arm and right hip and knee. Breathing also feels heavy sometimes on the right side and I have some chest pains and to go along with that. These things – starting with the right leg – have been going on for four months.

None of my symptoms are obvious to anyone else. I walk fine, talk fine (if a little less than normally), I exercise, I build stuff, I go to work. I function. This is a really good thing of course, but I have trouble being taken seriously. My doctor won't even see me anymore.

I know I've said all these things before, but I could really use some support. Wright said in an earlier post that my symptoms seem global, and that that's not typical for als. I seem to cling to that.

I asked in an earlier post if four months isn't a little bit too quick to go from zero to bodywide symptoms. I wouldn't mind some more input on that.

I won't ask you what else could it be, because I know you cannot answer that, but it's a thought that keeps going through my mind. It seems with bulbar issues the list of possible causes is kind of slim ...

Take care,
Tom

 

[BethU]

Hi, Tom ...I'll answer but I don't know what kind of help I can offer.

I started with bulbar symptoms, and what you've got going on does not sound at all like what I experienced. I've never had any sensations in my tongue or jaw at all of being weak or tired; I had extensive facis covering the surface of my tongue, and now have serious atrophy. My speech is 90% unintelligible, but I still don't feel any sensations in my tongue of "tiredness."

Other people were the ones who told me my speech was slurring. I could not detect it myself for many months after the slurring started.

From what you describe, I don't think you have any "bulbar issues." Also, from what you describe, your twitches, etc., do not sound like ALS.

You say you exercise: I don't know if you are a body builder or not, but it seems in my limited experience here on this forum that many of the people who are needlessly worried about twitches are either body-builders or heavy exercisers. My theory is that too much exercise and "bulking out" of muscles may induce benign twitching. That is, people are trying to "sculpt" their muscles, and pushing their muscles past their normal configurations, and this stresses the muscles, and they develop some "protest twitches," perhaps from overstimulation. Then the anxiety starts, and produces anxiety twitches, and it keeps building.

Of course, I don't know if that's what really happens or if it is just that bodybuilders and heavy exercisers may be more aware of their bodies and more inclined to worry about their bodies than others.

Anyway ... my crackpot theories aside, I hope you get your anxiety under control again. Nothing you describe sounds like "bulbar symptoms" to me.

Take it easy!

 

[wright]

Once again

Your symptoms all started in such a global manner, which points away from ALS. ALS is obviously a global disease . . . BUT . . . it doesn't hit you all at once like you describe. Unless you were completely unaware of your body prior to your symptoms, then it is a good sign. It's as simple as that.

 

[CindyM]

If it makes you feel any better, I can assure you that my tongue feels tingly quite often and the small muscles around my lips twitch a lot of the time. If I talk a lot or chew things like steak or huge sandwiches, my face hurts a little- as if I laughed too long, for example. And my jaw gets really tired. On bad days I have trouble making my mouth pronounce words. I know what I want to say, but my mouth takes its time saying it.

I have had these symptoms for over 2 years now and still no DX. No DX of ALS, MS, PLS, or any other bad thing. Relax. It is not time to worry yet. :smile:

 

[broodjeaapspeciaal]

Hi, Tom ...I'll answer but I don't know what kind of help I can offer.

I started with bulbar symptoms, and what you've got going on does not sound at all like what I experienced. I've never had any sensations in my tongue or jaw at all of being weak or tired; I had extensive facis covering the surface of my tongue, and now have serious atrophy. My speech is 90% unintelligible, but I still don't feel any sensations in my tongue of "tiredness."

Other people were the ones who told me my speech was slurring. I could not detect it myself for many months after the slurring started.

From what you describe, I don't think you have any "bulbar issues." Also, from what you describe, your twitches, etc., do not sound like ALS.

You say you exercise: I don't know if you are a body builder or not, but it seems in my limited experience here on this forum that many of the people who are needlessly worried about twitches are either body-builders or heavy exercisers. My theory is that too much exercise and "bulking out" of muscles may induce benign twitching. That is, people are trying to "sculpt" their muscles, and pushing their muscles past their normal configurations, and this stresses the muscles, and they develop some "protest twitches," perhaps from overstimulation. Then the anxiety starts, and produces anxiety twitches, and it keeps building.

Of course, I don't know if that's what really happens or if it is just that bodybuilders and heavy exercisers may be more aware of their bodies and more inclined to worry about their bodies than others.

Anyway ... my crackpot theories aside, I hope you get your anxiety under control again. Nothing you describe sounds like "bulbar symptoms" to me.

Take it easy!

Im with you on this one;
Sometimes muscle twitch because they are telling you that they are TIRED of working. Allot of weird stuff is getting produced when you are stressed or have anxiety.. so your muscles will twitch even more because they are in fight/flight mode all the time.

Anxiety can cause so many issues :

- Swollen tongue feeling
-Difficulty swallowing
-Persistent yawning
-Feeling nauseus / dizzy for no reason.
-Sometimes a overactive gag reflex in combination with the nauseus feelings
-Constant feeling that one side of your tongue is going to one of your cheeks.
-The feeling that your tongue does not fully co-operate with you and it will seem like you talk with a slurred speech
-Hoarse speech, or you crack more often.. this is usually only perceived and not real
-Your voice seem weaker.
-Emotional instability; you may cry or laugh in situations that are not even remotely close to being funny or sad.
-A lump or 'pressure' in your throat.
-Burning / crawling / itchy tongue sensations.

With the fear of having bulbar ALS, you will find yourself constantly standing infront of a mirror and doing silly tongue 'agility' or strenght tests. Every tongue is assymetric..

You will ALWAYS find dents if you look for them. I have dents from my teeth aswell.. this is normal! The right side of my tongue is slightly flatter then the left, because i chew there allot ( well, i assume ). When i slightly stick my tongue out, i can see 100 littles twitches because the muscles are constantly in relaxed / used state. Do not get freaked out by this!
Not convinced? Use Google image and search for human tongue and see if you can find one symmetric tongue

But since you have come on these forums because you are worried ( by twitching and ALS ), i assume that you have got some underlying anxiety. Most people with BFS think they have bulbar after they got a clean EMG and the anxiety created these symptoms.

Your problems with breathing can be a sign of chronic hyperventilation ( You have no idea what is going on and this will create stressful thoughts, it can sometimes develop into a full blown panic attack). Including the pain you have there. Hyperventilating will make it feel like breathing becomes really heavy; but in reality.. you are still breathing normally. The problem is that once you get these sensations, you start to breath faster and faster.

Sometimes anxiety can cause the small muscles between your ribs to go spasm so breathing will feel 10 times heavier, or create painful sensations that you might start to think that something is horrible wrong with your lungs. Anxiety and stress has also been known to cause intense chronic back pain.

The 'perceived' weakness or muscle fatigue is a common symptom with BFS. Same with exercise intolerance, false cramp sensations ( you feel there is a cramp going on but physically, no cramp takes place ) and false sensory sensations ( pain, hot / cold spots, pins and needles etc ). Widespread twitching is the main problem with BFS

Sometimes your muscles will feel weak for no apparent reason, but when a emergency takes place, you will still have ALL your strenght. This is very common in BFS. I suggest you to read this post on aboutbfs.com. It helps allot


BFS in a nutshell

http://nextination.com/aboutbfs/forums/viewtopic.php?f=3&t=200

Last thing, but it has to be said :

We twitchers are like so many other hypochondriacs. We search for a common symptom that can be found in so many diseases.. Yet, we look at the very bottom of that list. The worst case scenarios only.. and we are so convinced we have it that we make the doctors feel outcasted sometimes. For example; go search for fatigue. It is caused by more then 1000 diseases / disorders .. but people will always look for the serious ones like cancer or something, instead of thinking about something common like the flu or stress

Anxiety can destroy you if you do not take any actions against it ( By seeking help! dont be ashamed )

I hope this answers some of your questions.

 

[Hyppo]

Thanx every1

Beth: You have answered all of my posts thoroughly and with great compassion. Thank you. I'm not a body builder. I exercise moderately.

Wright: Your words mean a lot.

Cindy: Interesting. That's about the same as me. I never have a tingling tongue though. Just tired, about to cramp.

broodjeaapspeciaal: (I had to cut and paste your name. Are you dutch?) Yes, the anxiety theory is always handy. I won't rule it out, but I really do have some troubling symptoms. Thing is I wasn't a twitcher that showed up with weakness. The weakness came first. If I only had twitches I wouldn't be worried at all. I didn't even know they were abnormal until I started googling ALS.

 

[piperanne]

I too am having problems with my tongue. It usually starts with my left side of my face going heavy. I thought i was having a stroke, went to the ER TWICE and nothing. Everything came out "Perfect" I started having tingling in my left hands and feet. My foot started feeling cold but wasn't. Went to a neurologist, he tested me for MS. came out clean. I sometimes have a strangling sensation, left arm feels weak, and left foot feels strange......almost like I want to drag it but I don't. I don't feel this way all the time. Just sometimes. They said I had bell's palsy in my face, but it's very mild. It's not paralyzed all the way and goes and comes back. Usually it will follow in this order:

Heaviness of face, tongue feels heavy, then my foot, then my arm. Inbetween all these symptoms, I'm freaking so I WONDER if it's not anxiety. I've never had this problem with anxiety before. I started researching and came across ALS, this scared the mess out of me and then it started getting really bad. I almost convinced myself one night i had it. I still get very scared and will have to wait to see my nuero again. But anxiety can do crazy things to us.

 

[planningguy]

broodjeaapspeciaal,

That was a really informative link about BFS. I wish a lot of people without a diagnosed could read it. I learned a handful of things I never knew, such as the possibility of an elevated CPK. Worthy of a properly attributed quote sitcked in this section fo the forums perhaps?

Robert