When I said the people with MS may have cold hands, but they all have warm hearts in a prior post, I meant it—literally. When someone is under physiologic stress, blood is shunted from your non-priority organs and areas of the body to the central big muscles, the heart and the brain. Hands, feet, skin, bowels, reproductive organs are all considered nonessential (especially if you're running away from a tiger!).
Well wouldn't that be an interesting twist if our heightened nervous system/hyper-immune system that turns into MS and attacks our bodies was initially caused by sleep disorders, with the beginnings traced to our childhoods.
I will definitely be talking about a sleep study to one of my doctors..... whichever one I see next, unless its the GI doc who thinks I suffer from anxiety.
Brilliant sleuthing Dr. Watson, oops I mean Park.
Thanks for the hard work,
I am heading to bed, hopefully to rest...which I doubt. I just had to check the forum one more time because I was watching for your post.
I am totally amazed. It does appear to make sense and tomorrow I will re-read and ponder some more. I will also discuss it with my GP.
Very very interesting!
Hi! I am a side sleeper (prefer the left). I hardly ever sleep, I wake up from pain, to use the bathroom, and when I hear noises. I only snore lightly once in awhile and neither parent snored. My usual sleep length is 1-2 hours at a time and I will take 30 min to fall back to sleep before starting over.
I don't fit the profile but think that a sleep study would be a good idea.
Do you agree?
Thank you so much for this!
So, you think you can get up some funding for a study? You've already got the participants! Count me in!
Thank you again, Dr.
Thank you for all of your time! I have learned alot!
Why not ask the members here whether they've had a sleep study? I had one last spring, and followed up with a sleep specialist who is a pulmonologist. I even had to go through a half hour of breathing tests in her office. As I was virtutally sure, my sleep problems are not from sleep apnea or anything related to breathing. I just don't get anywhere enough deep and restorative sleep.
Many of our members, diagnosed and otherwise, do have sleep problems, and quite a few have had sleep studies. You might be interested in their experiences.
Thanks for your suggestion.
Has anyone here on this forum undergone a sleep study, and if so, what was the result?
I'm not clear—did you undergo a formal sleep study or just undergo pulmonary testing in the office?
One possible reason for why you may not be able to get deep, restorative sleep is because in certain individuals with the anatomy that I described earlier, every time you go into deep sleep, because of muscle relaxation, you'll stop breathing temporarily and wake up to light sleep. You'll never know if you wake up at all. If these pauses last for more than 10 seconds, then it's called an apnea. But people with upper airway resistance syndrome can stop breathing 10-20 or more times every hour and will have no apneas on a sleep study. These are the "light" sleepers, prone to waking up with every sound, movement or pain in the body. Also, there is no typical sleep apnea or UARS patient.
I did have an overnight study in a hospital, and saw all the graphs, etc., it produced. That's why I know it confirmed that I don't have breathing problems.
It sounds like you're OK from a breathing standpoint, but in some people, they can have major breathing issues that don't show up on a formal sleep study. This is a very technical explanation, but most people with UARS will have more than the usual spontaneous arousals, some of which are related to slight breathing pauses, but most of which are not.
One possible explanation that I heard from Dr. Guilleminault, a Stanford pioneer in sleep medicine and the person that originally described UARS is as follows: As your airway starts to narrow due to muscle relaxation, there are pressure sensors in your throat that picks up the fact that you're about to stop breathing. It sends a signal to your deep brain areas and your brain sends a signal to the rest of the body (and the tongue) to wake up to a lighter stage of sleep to prevent the tongue from collapsing. All this happens automatically, without you ever being aware, and without any evidence of brain wave activity on the scalp EEG leads since these signals never reach the outer brain areas.
There are other ways to determine UARS and the consequences of inefficient deep sleep, such as inspiratory flow limitation (IFL - seen as flattening of your nasal airflow tracings) and an abnormal CAP analysis (mathematical analysis of your brain waves to detect deep sleep instability. This is all fascinating information that I'm sure you'll see more about in a few years.
Hi. I haven't answered anything yet because I'm not diagnosed with MS, just a CIS of Transverse Myelitis. However, now that you have spilled the beans, here's my response, because it fits so well:
1. Side exclusively. Used to like stomach as a kid, but not so much now because it makes my back hurt.
2. Had cold hands as a teenager. Now that I'm an overweight 50+ age, they are warm.
3. Father snored like a chainsaw, was very obese, had type 2 diabetes, hypertension, and died of heart disease. Mom was petite, but she died of heart disease when she was 49.
I've had a sleep study and am on CPAP, which has helped my fatigue tons. I have high blood pressure and all that wonderful insulin resistance stuff. I was having some sort of arousal to my sleep about 40 times per hour during my study, don't remember if that's the AHI index or not--will check later at home. I had mostly hypopneas, a couple of apneas, and one mixed central/obstructive one. My MS specialist neurologist is also my sleep doctor, and he sees OSA or other sleep disorders in something around 50% of his MS patients.
Thanks for your comments, especially your MS specialist's reporting that 50% of MS patients have OSA or other sleep issues. If you add UARS, I'm sure that number will go much higher.
Even at 50%, do you think that all MS patients should get at least screened for sleep-breathing problems? Also, just because you don't have it when younger doesn't mean you can't get it
Sorry, I pressed post by mistake before I was finished.
Even at 50%, do you think that all MS patients should get at least screened for sleep-breathing problems? Also, just because you don't have it when younger doesn't mean you can't get sleep apnea later on. hbananas' story could be a great example.
You are definately on to something! Even when I sleep for 8 hours, I am not rested. I have TMJ problems. When I sleep on my back, my jaw falls and hurts. I am sure that it causes breathing problems. When I sleep on my side, my jaw moves to the side and aches. I did have my toncils out, my turbinates reduced, and my septom straightend last april. That had made a HUGE difference in the way that I sleep. I noticed afterward that I would wake up almost hungover from sleep. As if Ihad not slept in years. Maybe I had not! I do have tightly fitting teeth, especally on the top, and I do not usually snore.
As I mentioned somewhere in one of these threads (I think), I am undx for MS, but very frequently seeing what are possibly new signs of it, and working toward SOME dx, preferably NOT MS, of course. However, I do have OSA, and have been on CPAP for the better part of the past year. I think our oldest brother might be, also. (Memory's one of my symptoms lately). Also, our parents' snoring was often loud enough to wake us up when we were kids. I have five living siblings and two we lost as infants (in 1962 and 1967) due to breathing problems. No idea if this information tells you anything, but if it helps, use it.
Wow, very interesting! Thanks for sharing with us! I can't remember the last time i woke and actually felt rested. I'm sure it has been well over six months ago. (My son is 6 months old, lol.) Even before that, I still felt groggy quite often, to the point that I would drive to or from work (1/2 an hour) and fall asleep driving! And if I didn't fall asleep, there were many times that I would be so 'out of it', for lack of a better term, and especially if I had a migraine, that I wouldn't even remember the drive, or would completely miss my turns, after driving the same route for four years.
thats very interesting, my new Dr is driving me crazy about my sleep problem causing my fatigue and she has set me up for a sleep study. Not sure when but soon. I have had a sleep problem my whole adult life.
Will let you know when i have it....
Thank You for your interest and the comparison of sleep disorders that can effect MS patients.
I sleep on my back---2 back surgeries left me chronic bilateral adheasive arachnoiditis
I have raynaulds
My parents both snore--my mom has high blood pressure,my dad well he's an alcoholic and I don't remember when he was a Drs. last.
I have had an EEG,it was abnormal,but not positive for seizures.
It was the one where you have to be awake for 24 hours.Thats hard for one with MS.I can fall a sleep at the dinner table.Provigil does help some.
My adult son has MS. My husband has always been a heavy snorer and has very high blood pressure. AND, here is the big question...his mother had Narcolepsy. I have been reading that the gene(s) for MS and Narcolepsy may be the same. Your comment?
Scientists still haven't worked out all the details, but narcolepsy has been shown to be possibly due to a genetic mutation where a person doesn't make enough hypocretin. Interestingly this area of the brain is also involved in other various neurotransmitters that directly or indirectly also can be involved with MS. One possible explanation is that since MS is an autoimmune condition, and since it can affect any part of the brain, perhaps MS can also affect the area of the brain that makes hypocretin.
It also sounds like you may have a strong history of obstructive sleep apnea in your family.
Interesting posts. I c/o cold hands and feet all the time. But, my feet burn, so I leave socks off, blankets off, even though I can feel that they are too cold. My doc thinks my anxiety shunts all the blood to the major organs and hence, away from my extremities. A lack of oxygenated blood in those extremities is leading to neuropathy - per my doc. What do you think? After 2.5 years of relapsing/remitting pain, I am at a loss. Johns Hopkins did a small fiber biopsy that showed excessively segmented nerves. Their verdict was that there was some insult to the nerves at one time, but are healing. They don't feel like they are healing this month, but getting worse again. Thanks for any input!
do you happen to have antiphospholipid syndrome, or have you been tested for it?
I'm a 48 year old female who was diagnosed with MS 2 years ago. At that time, I was also diagnosed with crohn's (I also have a sister with crohn's.) I also have arthritis and at one time was told that I suffer from ankylosing spondylitis.
My parents have always been very heavy snorers. My mother, who is still living (age 84), has also has many health problems including heart disease (history of heart attack, stroke, mitral & aeortic valve replacement, by-pass), ulcerative colitis, macular degeneration, and crippling arthritis. Also, I have a brother who has had heart by-pass and another brother who has been recently diagnosed with sleep apnea. My father will be 90 in March and has some health problems normal for his age. After reading your post, I thought you might find my background interesting.
P.S. I am a side sleeper.
Hello Dr Park,
I have been told by my husband that I am a LOUD snorer... He said it has only been in the last couple of years. I am up many times through the night, waking up for no reason. I have been put on Trazadone (50mg) for this issue, and it was working for a while, (didnt help the snoring ) but now, I am back in my patterns of getting up a few times in a night. I get up, get a drink, or whatever, then I go right back to sleep again. Any Suggestions???
I found your information very interesting... Thank you so much!!