My Vicious Circle
I'm sure from time to time almost everyone has determined that they are in some sort of vicious circle that they just can't get out of. Try as you might you just can't get anywhere. This is where I'm at right now and actually I've been there since my MS diagnosis. Normally I don't write too much about my disease these days because I feel great 99 percent of the time so I really am not complaining. It's just the way the system works that's driving me nuts.
I went to see my new neurologist a few months ago and after two visits had yet to form an opinion about him. I still don't have an opinion because I just can't seem to get anywhere. I think I've mentioned before several months ago about a difficulty breathing. I wake up in the middle of the night and it's like I've forgotten how to inhale. Very scary. Well, when I went to see the new neurologist I asked him if this could be related in any way to my MS. He was very quick to answer "no" even without looking inside my chart.
Here's where I'm starting to lose faith in this guy too: I stumbled upon something yesterday and it's making me re-evaluate my treatment and this neurologist. I was taking a quiz on MSN.com about the brain. I figured I knew a lot about it so I gave it a whirl. By the way... I scored very high. Anyway, one of the questions had multiple choice answers and one was the "Pons". This word jumped out at me as instantly familiar because I've seen it on my MRI reports. I pulled out my reports and it states I have a lesion in the Pons (a part of the brain stem). I looked up "Pons" and was horrified at what I discovered.
The Pons is the part of your brain that is responsible for regulating breathing. Hello!?!? How could this neurologist not know that? It basically sends the signal to your body telling it to breathe. No wonder I feel like I've forgotten how to breathe. The signal isn't getting through. This is not necessarily rare for a person who has a lesion there and it can in fact be deadly. I repeat... Deadly. No kidding. I sure felt like I was dying those few times this happened. The Pons can also regulate heart rhythms too. Gee... seems to me I've been to the cardiologist for those symptoms too.
I seriously need help. For months I've been terrified that I'm not going to wake up and my husband will find me dead in bed because I didn't breathe. Seriously. And I can't get anyone to take me seriously (any doctor, that is). I think I'll go back to the naturopathic MD and see if he can help me. I mean really, why go to a neurologist who won't blame anything on MS. They can diagnose you but won't blame it for any symptoms?
You go to your primary doctor and when they can't diagnose you right away they say it must be related to MS. So you go to your neurologist and they won't blame anything on it. This is my vicious circle. I just want someone to listen to me and help me. Is that too much to ask?
posted by Miss Chris | 2:04 PM
11 Comments:
I wonder if a CPAP (continuous positive airway pressure) machine would provide enough stimulation to the brain to continue to breathe. I'm personally not familiar with MS-related breathing issues. It certainly does sound quite frightening.
Lisa: I'm definitely going to look into that. I can't live my life being afraid to go to sleep! :)
Chrissie: AACK! I accidentally deleted your great comments. That's what I get for reviewing comments before my morning coffee. Oops! Sorry...
I do remember my neuro saying breathing problems CAN BE an issue with MS!
I forgot why it came up in convo but she did say that.
That is scary.
Myelin: At least I know I'm not going nuts. I just thank God every morning I wake up.
That IS frightening! I'm sure if you went back to neuro-man with what you have learned he'd look at you with distain and treat you worse. They hate it when we do that! Hope you find some answeers from someone that will at the very least say when they really don't know something.
Hello Miss Chris,
I'd look into it too because when I was diagnosed (in 19854-1985) my doctors told me (afterward of course,) that my medulla oblongata was absolutely fried.
One of the things they'd lined up for me in the Neuro ICU was somebody who kept trying to regulate my breathing. Because of my enormous rib cage and the fact that I could have bench-pressed her without breaking a sweat, she was totally ineffectual; charming but ineffectual. (I would have told her but at the time I couldn't pronounce the phoneme "A".)
Breathing can be a problem with MS.
I still can't regulate my breathing and that means that I can't hold my breath (thank heavens I don't swim anymore,) or sing (not that I ever could sing,) but I could modulate my voice and used to do all kinds of warbling bird imitations and other things that required good breath control.
As anybody can tell you, first and foremost, you need air.
Mazlows' revised pyramid goes:
without air, four minutes,
without water, four days,
without food, four weeks,
without sex, forget it.
Bubbie: You're so right when you say a doctor would look at me with distain. They're so full of themselves in the thinking that they know everything.
Charles A: Thanks for that information. I'll keep looking into it. Maybe when I have enough evidence I can present it to a doctor and actually get someplace.
Check your insurance and see if it covers a sleep specialist. If it does and you don't need a referral (or even if you DO, get your GP to send the frickin' referral in!) and go get a sleep study done by someone who specializes in this. They can tell you all kinds of things about your brain waves, breathing patterns, muscle movements, O2 sats, etc.
Just make it happen and get it done...hell, I'll send you a referral letter from Seattle if you need it! Serious as a heart attack here...LOL
Linda D. in Seattle
Linda D: You are so sweet. And also so right! I really need to nip this thing in the bud before something awful happens. I'll keep ya posted.
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