Breathing difficulty

[Adele]

I've written before but would like to ask this question again.  Although having different symtoms for over four years I have not been diagnosed. My main problems now are with difficulty swallowing,weakness especially on my right side. I have been feeling like the right side of my face is going numb although it is not numb. The biggest thing though is this feeling like I cannot get air into my lungs.  It started off over three years ago coming and going but now it's constant sometimes worse that other times.  When I'm moving around or even exercising it feels better.  The last month or so it's been almost unbearable. I guess the worse part is not really knowing what it is and everyone thinking its all in my head.  I've had an MRI in June which showed nothing.  I've never had an LP or any other test except a regular neuro exam in the office at which time he as much said it was anxiety.  I know it not that.
Could you please tell me what is bulbar MS and how it progresses?  I can never seem to find an answer to these questions.  Thank you.

[CCF neuro MD MM]

Bulbar MS is eeesntialy the same as bulbar als, the muscles which control speech, swallowing and breathing are weakened, the progression is not as predictable as it usually follows the relapsing remitting course of MS rather than the progressive course of ALS. Bulbar MS would also be expected to be accompanied by othdr manifestations of MS, especially poor co-ordinatio due tom involvement of the cerebellum which is close to the involved area.

[snow]

Hi Adele,

I'm not a doctor, but I certainly sympathize with how you feel.  And I know how upsetting it is to be told that your problems might be from anxiety; however---I just wanted to let you know that I've had the same sensations as you have with regards to feeling like I couldn't get air in my lungs, and it was definitely when i was anxious.  I found that the more I paid attention to it, the worse it got.  The fact that it doesn't bother you when you're exercising or sleeping is a good sign, and probably it's because you're not thinking about it then--you're focusing on something else--exercise (or not focusing at all, as is the case when we're asleep).  I also noticed that when I had that breathing problem, parts of my body felt tingly and numb.  My doctor explained that that's because when we feel like we're not getting oxygen, we can unknowingly hyperventilate (breathe too much or too fast), and too much oxygen can make you feel faint and numb/or and tingly.  It used to happen to me pretty regularly when I had to speak in public at meetings--my hands would get numb and kind of cramp up on me.  The more I felt like I couldn't breathe, the worse it got.  But I found that if i got involved in something else and stopped thinking about it, it went away.

Maybe that's not what your problem is from...but at least the doctor seems convinced that it isn't ALS.  

I've never heard of bulbar MS, just bulbar ALS.  Are you sure bulbar MS even exists?  Maybe you're confusing the two?

On the other hand, I don't want to discourage you from getting tests.  My MS lesions didn't show up until my 4th MRI, after about 2.5 years of symptoms....

Good luck to you.  I hope you can find answers, AND relief!  Hang in there!

Snowflake

[Adele]

My question was about bulbar MS  not ALS.  One neurologist I talked to referred to that but would really not explain what it was.

[Estelle]

I have had this and am now diagnosed MS. HOWEVER in my case this was related to anxiety disorder - I got it only when in certain places (the bank was a favorite!) and I found that controlling my anxiety disorder got rid of this symptom completely. It was my PCP convincing me I WAS able to breath and was taking unnecessary deep breaths (thereby hyperventilating and blowing off too much carbon dioxide!) that led me to control and eventually get rid of this horrible sensation.

It may not be the same thing in your case. IF you are taking deeper and deeper breaths it is what I had, which is hyperventilation.

[CCF neuro MD MM]

Bulbar ALS involves severe progressive weakness of the muscles in the throat to the point where the person cannot speak, swallow or eventually breathe.
A subjective sensation of breathing difficulty alone is in no way suggestive of bulbar ALS unless it is accompanied by choking on food and loss of the ability to spaek.
The single most significant factoe in your case is that this has been going on for years, bulbar ALS would have progress to the pointbdescribed above within 1-2 years.
If no physical basis has been found for your symptoms it may poossible be reated to anxiety which can cause very distressing sensations like this, certainly there is nothing to suggest ALS from what you describe.