Brainstem Lesions slowing my life to a crawl

[Thinkimjob]

Lisa--so sorry you have to deal with these issues. I certainly can relate...brain stem lesions can just suck the life out of you. Just take it one day at a time Darlin'. 🌷🌷🌷

Yay! KatieAgain! Still with us.🙃

[mjan]

Hi everyone! I have not been on this forum for a long time period just did a search about brain stem lesions and was led to this post.

Now I'm having a sleep study which the 1st one revealed ayah central sleep apnea. But then the doctor said it's not bad enough to be given a bi pap.

Now I'm going to have a second sleep study to rule in or out narcolepsy. The treatment for narcolepsy is provigil.

At least my MS neurologists said she will give me provigil if they don't find it is narcolepsy.

I have shortness of breath sometimes up to 8 days and it affects my C02 levels. I am fighting now to see if someone will give me a bi pap to help with my breathing.

No one ever mentioned I had brain stem lesions until this last MRI showed them but said they were stable.

Anyone else gone through something similar?

Sending healing loving hugs to all! Jan

[KoKo]

Hi mjan

Nice to see you again, and glad that you stopped by here.

Sorry to learn about your breathing problems. I'm sure that can be exhausting, causing you to be tired.

Hope you get the help you need - the use of a bi pap and the Provigil, if that's what will help you.

Good Luck!

Take Care

[Jules A]

Hi mjan! Blast from the past. I wondered how Lisa is doing when I saw this thread but nice to see you back.

[marti]

Hi everyone! I have not been on this forum for a long time period just did a search about brain stem lesions and was led to this post.

Now I'm having a sleep study which the 1st one revealed ayah central sleep apnea. But then the doctor said it's not bad enough to be given a bi pap.

Now I'm going to have a second sleep study to rule in or out narcolepsy. The treatment for narcolepsy is provigil.

At least my MS neurologists said she will give me provigil if they don't find it is narcolepsy.

I have shortness of breath sometimes up to 8 days and it affects my C02 levels. I am fighting now to see if someone will give me a bi pap to help with my breathing.

No one ever mentioned I had brain stem lesions until this last MRI showed them but said they were stable.

Anyone else gone through something similar?

Sending healing loving hugs to all! Jan

So happy to see you again Jan. It has been a long time. Sorry about all your issues. Life just marches on with the good and the bad doesn't it! If I remember correctly you have POTS.... yes? Doesn't that affect your breathing? Let us know as soon as you can.

[rdmc]

Hi everyone! I have not been on this forum for a long time period just did a search about brain stem lesions and was led to this post.

Now I'm having a sleep study which the 1st one revealed ayah central sleep apnea. But then the doctor said it's not bad enough to be given a bi pap.

Now I'm going to have a second sleep study to rule in or out narcolepsy. The treatment for narcolepsy is provigil.

At least my MS neurologists said she will give me provigil if they don't find it is narcolepsy.

I have shortness of breath sometimes up to 8 days and it affects my C02 levels. I am fighting now to see if someone will give me a bi pap to help with my breathing.

No one ever mentioned I had brain stem lesions until this last MRI showed them but said they were stable.

Anyone else gone through something similar?

Sending healing loving hugs to all! Jan

Hi Jan,

I haven't been on the forums lately.

I have a large lesion in my medulla oblongata (part of the brainstem.) It's been there for at least 10 years and remains stable. It affects my autonomic functions (respiration, heart rate, and bp.) I do have a Bipap. I don't understand why the hold up on a bipap would be. It does works better than a cpap. I've had to lay off the bipap for awhile because I was having problems with it triggering the glossopharyngeal neuralgia.

I've actually been pretty good without it (I measure that because of the dreams I've been having ) Seriously though, I never dreamed and this is a result of sleep apnea...then with the machines I began to have dreams....and now even though I've been off the machines I'm still dreaming. Crazy way to gauge it. I will get another sleep study sometime, and find out the "real truth" about my apnea.

My brainstem lesion also affect my cranial nerves. The most troublesome symptoms are slurred speech, pain in my face/tongue on one side. My speech is getting pretty bad. Between the slurring and word finding, I can be a little hard to understand. My 2 year old grandson deals with
it this way. If I'm reading him a book and my slurring kicks in, when there's a page he can't quite understand what I've said, he says, "Reread that Grandma." Always cracks me up, but it the right way to tell some they didn't understand.

I'm also having O2 sat. levels. I have a oximeter and take my vitals a few times a day
due to the other issues, as well. I don't know where the low oxygen is caused by. It could be autonomic, and also in the last couple years I've developed neuromuscular scoliosis, that has
been in rapid decline. Because my posture is so bad, they wonder if that could be causing
the O2 problem. Time will tell. That's what I find confusing because there are so many things going bad that it's not quite clear what symptom is caused by which lesion or demyelinated area.

Well, I've ranted enough. Once again, good to see you Jan.