Sleep study tonight

[kerrtelli]

Well, tonight is my sleep study.  I am looking forward to starting the ball rolling.  The sleep doc said he was also going to have an EEG run while I was in the study.  That sort of kills two birds.  I am hoping they find why i am gasping and not keeping well

Today, at work, the administrative assistant who worked as an RN in a neurology group looked at my MRI'S.  I picked up the discs for my ms specialist appt next week.  She knows how to read them from when she worked in the medical office.  She said that she saw the lesions in question and that they were where one would typically see lesions with people with ms.  She has also seen the decline in my health first hand.  I went from a happy go lucky jumping and singing music teacher to a rickety old lady in two months.  I am only  forty!  I told her that yesterday when I was at the hospital to see the sleep doctor i had to walk more than i usually do, which is barely at all anymore.  When I got home last night my legs were spasming like crazy and hurt.

What i surmised from this was that i cannot walk far any longer.  Its a very sad situation because last year at this time i was running 3-5 miles at a clip and now I can't get down the block without my cane,  what the f@&@!

I almost feel like i am going to have to get a chair so that I can make it farther than a block.

I am rambling again.  Thanks for the advise.  Again.
Kerri

[SarahL2491]

guess I won't get the sleep study; I could not tolerate the CPAP or BiPAP, can't stand anything over my face, which is why I don't ride the big red fire engine anymore..........
oh well, I can count stars when I can't sleep.  My new neuro's mom had MS so can't wait for my appt in Oct

[Lulu54]

I hope you have the sleep appt before the MSologist so you will have those results, too.

The sleep doctor I saw is a neurologist - I wonder if most of them are neuros since it involves the brain?  

Glad to hear you got the goop out - MS or not, it is gross!

The heat can cause lots of problems for us, but I've not heard of it associated with hearing loss.  That would be intersting to know if others have observed that problem.  I know my vision gets worse when I overheat and it makes sense to me that hearing might do the same.  

Lu

[kerrtelli]

Thanks everyone.  I am back from the study.  It went pretty well.  I had NO problem falling asleep because of my fatigue.  I actually had to keep myself awake for the technologist.  It turns out his wife has MS and I told him about the forum and how great it is.  I think that's why it took him so long to get me connected, we kept talking.

I got the goop out Lulu, although it was really disgusting.  I think since all of this began, my senses have changed.  I literally couldn't touch the stuff with bare hands.

I asked the technologist if he saw anything and he said he couldn't say.
Of course I had to get up during the night for you know what but again, I had no problems falling back to sleep.

I am really hoping this brings some light to my issues.  My appt with the MS specialist is next week and from what I hear, this guy will know whether I have MS symptoms or not.  He has MS himself.  I guess I just have to wait.  I am thinking I might be in a flair again.  I am feeling exhausted, walking is trickier than its been and am getting wicked cramps again in calves.  Also having hearing problems in right ear.  My students are talking to me and I have to ask them to repeat themselves at least twice.  Maybe its just the heat that showed up.

I appreciate all of your advice and help as usual.
I'll update once I know.  I have an appt with the sleep doctor the same day as the neuro.

Thanks.

[Nat_2010]

Good Luck with your sleep apnea I had mine In april and diagnosed with severe obstructive sleep apena..I now sleep with a CPAP machine...I hope you get the help you need

[Sarahsmom46]

You are probably already at the sleep center by now, so I can't pass on any advice from my several studies.  Lu is right about the goop.  It washes out pretty well, but you'll still be picking it out for a couple days.  

My sleep studies determined that my apnea was bad enough to warrant a CPAP or breathing machine at night.  I asked if this was being caused by MS and was told that although it is not unusual for MSers to have apnea, but it is not a symptom of MS unless you have lesions in your brainstem.  That's what the neuro told me.  I have lesions in my thoracic spine and a suspicious one in my cervical, but nothing in my brainstem so maybe you can ask that question of you neuro and see what he/she thinks.  

Anyway, hope you get some concrete answers from you night of being wired up.  

Julie

[Lulu54]

Kerri - here's to a good night's sleep that captures all of your problems.  The  sleep study is a very important tool .  I hope they give you good tips on how to get the goop out of your hair - if I remmeber correctly the best thing to do is get it with warm water and massage it WITHOUT the shampoo.  You have to caress the cement off your hair.

best, Lulu

[madmelissa]

Kerri,

Feel free to ramble away! lol I'm sure I do! I'm excited for you, that you get to do this sleep study. I hope that it brings you answers. I am right there with you on the walking/jogging issue. 2 years ago I was jogging regularly. Now I'm happy if I can make it across my living room without tripping over my right foot. I broke down and got a cane the "relapse" before last (not sure what to call it when I'm undiagnosed). I feel lucky that I haven't gotten quite to the point where I've had to use it (though I've wished I had it with me a few times), but I'll be darned if I'm going to wake up one morning and not be able to make it to work.

I'm so sorry that you seem to have had such a quick progression. It's so frustrating dealing with the "Wait, I'm too young to feel like this and have my body fall apart" issue. At least we know we are not alone here with this.

I really hope the study goes well!
Melissa