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Should I worry?
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GertieSue posted:
I have had M.S. for about 4 years now. Recently, when laying down for sleep, I have had a hard time trying to get my breath. It's almost as if I forget how to breath. Do you think I should call my doctor or no? I hate bothering him.
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hackwriter responded:
Dear Gertie,

Definitely call your doctor, that's pretty serious.

I'm fairly certain that your doc would wish you'd have called if you stopped breathing and had to be rushed to the ER.

Hope you'll follow up and make that call--and do let us know the outcome. Take care of yourself; you are paying the doctor to be bothered.

Kim
 
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roberlyn responded:
I agree with Kim. Better to be safe than sorry, ESPECIALLY when it comes to being able to breathe! Your doctor would much rather you call for nothing than you are scared to call and something serious happens.

Robyn
 
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Anon_31384 responded:
Hello,

I hope you let doctors know. Breathing is to be taken with care. Web MD may have some info on the MS and breathing.
I found some more info below National MS Society. Take Care Catibabe
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Respiration or breathing is primarily under the control of the autonomic or "automatic" nervous system—the part of the central nervous system that controls vital functions such as heartbeat and respiration without conscious thought. It is unusual for MS to affect the autonomic nervous system, and therefore uncommon for breathing problems to occur in MS as a direct result of loss of autonomic control. If breathing problems occur suddenly, it is imperative to see the health care provider immediately or go to the emergency room since this may indicate infection or some other problem.
Weakness of the ventilatory muscles can begin early in the diseaseIn MS, the most common cause of respiratory problems is loss of muscle strength and endurance. Just as a person can experience muscle weakness in the arms or legs, weakness can occur in the ventilatory muscles of the chest and abdomen that are involved in breathing. And like weakness in the other parts of the body, weakness of the ventilatory muscles can begin to occur early in the disease course and gradually worsen over time.
 
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Elizabeth_WebMD_Staff replied to Anon_31384's response:
Hi GertiSue,

It's been a few days since you posted, I hope you have contacted your doctor to figure out what's going on.

Here is info that the above poster referred to. This article, Recongnizing MS , mentions breathing problems and seizures are rare symptoms of MS.

Please check in and let us know how you are doing,
Elizabeth
 
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GertieSue responded:
Thanks to all that responded. I did contact my doctor. I have an appointment to see him on the 8th. He doesn't seem to think the breathing is a problem and said I shouldn't be concerned, but he wants to see me any way? I'll keep you all informed.
 
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hackwriter replied to GertieSue's response:
GertieSue,

Since you'll be seeing your doc today, I hope you'll pop in and let us know what he has advised about your breathing issue.

Hope you're well.

Kim
 
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GertieSue replied to hackwriter's response:
I ddi see my doctor. He was confused by what was confused by it. He wants my boyfriend to see if I stop breathing through the night, he is wondering if it's sleep apthany (can't even say it right so let alone spell it. He doesn't seem to think I need any further MRI's or treatments as of this time.
 
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hackwriter replied to GertieSue's response:
Dear GertieSue,

Sleep apnea is diagnosed with a sleep study that requires you to be monitored in a lab overnight. It is a disorder that makes you stop breathing for short intervals during your sleep and it isn't something you would be aware of as far as having trouble breathing upon awakening or falling asleep. You might be sleepy during the day or actually fall asleep at work or at the wheel.

If you want to investigate it further, you might see your PCP and inquire further about having a sleep study or seeing a pulmonologist for further consultation. Asthma is another thing that came to my mind. It is also possible for MS damage to affect our breathing, swallowing and coughing reflexes.

I think your neuro dropped the ball on this one. If your PCP is more motivated, you might go back to square one and push for more answers.

Kim
 
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GertieSue replied to hackwriter's response:
I hope you're wrong, but I will follow up with my PCP. The problem with that is, she keeps changing. Since I've been going to this clinic I've had 3 PCP's. When I see a new one, I have to go through the whole story of what's wrong with me. Tell them about all of my meds, cause for some reason they don't have it in their comps. So frustrating! If you know anything about MS, it makes it hard for you to communicate. So, with all of this communication that I have a hard time with, I feel the doctors don't understand what I am telling them. Any suggestions? I feel more comfortable with you then the doctors. Damn shame huh?
 
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hackwriter replied to GertieSue's response:
Dear GertieSue,

I hear you--though MS is a complicated thing and I've never been able to explain it in a haiku, LOL. (That's a poem set in three brief phrases in case you're not familiar.)

If I were to see my PCP about this and I saw a new doc, I'd first tell them I'm having some breathing issues and briefly explain what's been happening.

Then I would say I've seen my neuro about it and came up blank. She would then start flipping through my thick chart looking for why I'm are seeing a neurologist, LOL. She might, at this point, pull out her stethoscope and check my breathing.

I would then tell her I have MS and the neuro mentioned a sleep study. The doc might give her opinion about that, yea or nay. If the doc doesn't suggest doing that, doesn't suggest something else and says "keep an eye on it," I would then say it's been going on for X number of days/weeks, and though I'm not convinced it isn't MS-related because damage can affect breathing/swallowing, I'd be open to exploring other possibilities. Could it be asthma? Start throwing things out there and challenge her. If she asks about a history of panic attacks (grrrr...) say you have no history of it and you are certain it isn't emotional. Stay calm and persistent.

If you come up blank again, let us know. Sometimes we have to dig into more research and go back to the doc again. Keep a symptom log and bring it to the appt. Be specific.

Hope this helps.

Kim
 
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GertieSue replied to hackwriter's response:
Kim, I don't know who you are or what you do for a living, but you sure are informative. I really appreciate your help and suggestions. It was quite scary!
Thank You,
Lee Ann
 
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hackwriter replied to GertieSue's response:
Lee Ann,

See my bio on the thread titled: "Monday check-in, 2/06.."

I'm just a retired MSer who does a lot of research and with a lot of time on my hands.

Glad you found something useful in my ramblings.

Kim
 
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Csewhappy replied to hackwriter's response:
Errrrmmmm ... less of the 'I'm just a ...' stuff please Kim; otherwise I may have to go for that blue 'Report This' tab!


Far far too modest. Lee Ann, there's no 'just' about this lovely lady. She is actually an invaluable asset and font of information for the rest of us.

Yes Kim, you may have time on your hands, but I sure do appreciate the way you put it to use. Sorry to make you blush,
Carol
 
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GertieSue replied to Csewhappy's response:
I AGREE WITH CAROL! Kim you are awesome! Thankful you have so much time on your hands! Honey I don't know where else I would've looked or who else to have asked. I really APPRECIATE IT!


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