not me but I'll give this a BUMP to see if anyone catches it.....sometimes I notice I have probs breathing but only for a second and usually while doing something. sometimes it follows that I can't swallow for a sec and I'll cough up things suddenly or just get my neck stuck...
its gotta be MS so someone else has got to have your prob right?

BUMP

GOod luck!

Hi, I have moderate to severe sleep apnea and sometimes use a CPAP. (I hate it.) I'm not formally diagnosed with MS yet, but they consider me to have "white matter disease" and symptoms associated with demylination.

One of my problems is periodic limb movement. (I kick with my left leg at night.) This was discovered during my sleep study and is considered neurologic and not associated with sleep apnea. The CPAP doesn't seem to have an effect on the tremors or leg movement.

I know I should wear the mask every night, but the blowing seems to cause facial pain. (Tip of nose and upper lip.) I have some pain even without the mask, but it seems worse with the thing blowing in my face.

I was diagnosed with esophageal cancer a few weeks ago. I'm going through the "staging process" now so that they can figure out if I should have surgery, chemo, radiation, or some combination. With cancer being more on my mind now than either sleep apnea or MS, I'm not losing any sleep (pardon the pun) worrying about wearing the CPAP.

I hope this helps and doesn't just muddy the water. I know I didn't exactly answer the question.

I have severe sleep apnea, and wake up over 70 times an hour, that was diagnosed after MS. During one of my sleep studies, the doctor said that my muscles jerked all night long. But, I don't notice them. I have sleep apnea using a CPAP, so I had to go to a full face mask. It really lulls me to sleep. I don't really like my new mask and have to readjust it a lot.

But, I do know that before my MS diagnoses, I went for a sleep study, because of fatigue, and turned out I didn't have it. Then after MS dx......I have severe. So, could be totally related, but no doctor has told me that. Makes me wonder now.

I have had this happen to me.
And the problem swallowing also.

Thanks for your input,
Spion I use the pillows so there is no air blowing towards me unless I don't have the pieces in my nose right and if they are right the excess air blows away from me, and am so sorry to hear you had cancer put on you also and I'll keep you in my prayers.

MSKC the funny part is they said I don't have sleep apena so that is why I don't feel rested, but they were worried about the amount of times I stopped breathing. The reason I was sent for testing was because of fatigue and I was having a Flair at the time of the test and did'nt know as I got my DX in btween the 2 sleep studies, some nights I do feel better other nights keeps me up and I take it off, and I don't know how you use a full face mask, that almost scared me away from the study when I walked by and saw someone with one on. Seeing as MS mess's with everything else why not breathing as the brain controls all.

The other thing they said was wierd was that I have 2 dream cycles, one at the beginning of sleep and they said that was very unusual and than the normal at the end of sleep. I just want a good heavy sleep once in a while and my doc got the report and took away my meds for helping me sleep, because he said it slows the breathing down, but he used a fancy word.

Thanks for the replies
Dave

Glad to hear that the pillows are working for you. The doctors keep making adjustments to my mask and now have given me a new mask, but it is just like the old one! Not any better at all.

I REALLY appreciate the prayers. This esophageal cancer was completely unexpected. I haven't taken it all in yet. I go in for another endoscope and ultrasound next week so they can "stage" it and determine a treatment plan. Best case is "stage 0" with an 80 - 90 percent survival rate. Five year survival rate for "stage 1" is only 34% and it falls off dramatically after that. CPAP (and even MS) are no longer high on my worry list.

Hi, Sorry for all that have to use the cpap masks but you can get used to them when you get the right one for you.

Spion - sorry about your cancer. Please don't go by the figures esp if they say you are worst case scenario. Fight it in any way you can, think positive, live healthy & happy. I have a cousin who was told to say goodbye so many times (cancer of bowel, then lymph, various other parts, now both lungs), she is still going & happy & enjoying life. Doesnt know how long, trying every treatment & doing well now (has had bad patches). Another friend, stage 3 breast cancer, told very bad, dbl masectomy, chemo etc & doing it tough but surviving. People will tell you horror stories, just want to encourage you, with positive thoughts, lots of prayers, live well & fight in any way you can.
Enjoy every day & try not to get down too.

oleblue - sorry about cpap, I use one as well. It sounds like you have a prongs mask which I could not stand the thought of. I have found it very helpful. They will not state that ms caused it but have said that it is common for people with ms to have sleep apneo & need the machines.
Brain not working enough to answer other points but try it & see if it helps after a while too.
Someone said about face pain under mask, I have found rubbing a moisturiser on face where mask is going makes it a lot more comfortable & if I wake up & it is hurting, esp between nose/lips I put more moisturiser there & it helps me to be able to use it & sleep. I have half face mask but hubby commented that I am still breathing through mouth so may have to switch if it continues.
Take care & try to sleep.