I was getting very dizzy, to the point that I was vomiting. I see spots in front of my eyes. When I go to sleep, my oxygen levels drop signifigantly. My blood pressure behaves erraticly. My doctor suspected a heart problem, but my heart tested out ok, so he did a test where he used a machine to blow air into my ears while he watched my pupils. I got the news yesterday. Even though I haven't any visable lesions on my brain stem..it has somehow been affected by the MS. I was horrified to hear this, but after researching it online, found that brain stem involvement was common with ms

I actually didn't know about this, and I'm wondering if anyone else here has brain stem involvement with their ms, and what the effects are.

This is something totally new to me. The good news is that other than fatigue, and some dizzyness, symptom wise, I feel great.

Any advice at all would be great. Hugs.

first hugs its scary. I too have some involvement, but they cannot figure out how. I do temperature things, and BP things and heart rate things. My heart rate will shoot up to 150 and then drop back to 60 while I am sitting in a chair. Sometimes it feels like I have a butterfly in my throat. My heart tests out fine. I have a high resting heart rate of over 80. Even when I was a fantastic sporstwoman I had a high rate. My blood pressure will sometime hover at 90/60 and then climb back ten minutes later to 110/70.

My MRI and scans are unable to locate a lesion on the stem, but according to the MD there is no other explaination. I also have tummy issues, that my tummy will simply stop. it wont work. I drink water and 12 hours later its still in my tummy. Like the tummy doesnt get the signal to empty. Many days its fine, and many days its not.

This is such a strange disease. I expected it to be about dragging a leg or a wheel chair. I had no idea I would be half blind, fuzzy vision, cog fogged, and exhausted. I had no idea my resp rate would drop to 6 per minute while I sleep. its not apnea as I have been tested, and its regular, its just really slow.

I would do more research and be in contact with your MDs office to get more details about how YOUR MS is affecting your life. its such an individual disease. A sx that makes me insane may never affect you, and vice versa.

I hope you get answers.

Yes, the brain stem can be involved. to one degree or another. I am so sorry that this has been added to your woes. It sounds like yours may be slightly involved and, hopefully, won't cause you a lot of trouble.

I have no idea if my brain stem is involved with my MS. I doubt it, though, as I don't seem to have the SX that go with?

I googled MS & Brain Stem and got this illustration:

http://www.mult-sclerosis.org/brainstem.html

My neuro has never used that term....."brain stem involvement" but I have and have had some of the sx that this article says are common.

After reading that, Kell, we may all have some BSI. I had only heard about the heart, temperature and resperatory Symptoms.

My lasting symptoms (burning mouth, tremendous cranial nerve pain etc) my neurologist believes (in his last write up after seeing me) to be due to damage during a relapse to the brain stem region.

I'd previously seen another neurologist while mine was on vacation who I first talked to about the burning. He too mentioned that it's brain stem involvement that would cause this type of symptom.

Edit: I checked out Kitty's link provided. I've had 2 bouts of 3 week, then 2 week, long vertigo, as well as blurry/double vision (woke up to that one day) since summer 07. So perhaps my brain stem has just been taken to the cleaners by my MS.

Those lesions on the brainstem can be very difficult locate. I had at least one on my MRI, it looked like a small fuzzy streak like these below.

jackD

Oh my...Zat you Jack? Nice looking brain stem.

Thank you. I've never seen one before.

Noidy- I have lesions everywhere, definitely around the brain stem and cerebellum, so it causes horrific spells of vertigo.

I notice I can't sleep on my back as it will send me into the spins, even if I am sleeping.

Do you do weird/scary stuff in your sleep?

The reason I ask this is I am wondering if the brain stem lesions are what is causing this....

I shoot straight out of my sleep in a panic not knowing what's wrong with me, My inside's feel like I am dying, then about a minute and a half of being awake the feeling goes away and I can go back to sleep.
I am thinking that this has something to do with that lesion, my neuro said I am having little panic attacks, but I can't believe that. I don't have panic attacks and if I did wouldn't I get them in the day too instead of just in my sleep.

Hey Sally, we should start our own MS singles dating site. We could put up pics of our brains or MRI scans instead of photos!

***just kidding....sort of.***