Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I'm not officially part of the MS group yet (I'm still waiting for results) but I was hoping one of you might be able to help me answer a question or two. I'm sorry in advance that this is rather long. Thanks for taking the time to read it.
First let me give you a little bit of background so my post makes sense. About 3 years ago I had what I believe was my first MS attack. At the time I was told by the neuro that I either had epilepsy or was crazy. He checked for epilepsy and when it came back negative I was blown off and told to look for a psychiatrist. I continued to have these episodes frequently and I still get them every 2 to 4 weeks.
These episodes (attacks, flare up, I don't know) start with a buzzing feeling that runs from my toes all the way up my body. Then I can't move or talk although I'm still conscious, feel pain, and can hear. I get muscle spasms all over, sometimes they progress to nasty muscle contractions.
The part that scares me the most is that recently when I've had these episodes I feel like I can't breathe. Sometimes it's because my stomach muscles have tightened and it makes it hard to breathe but sometimes I just don't seem to take my next breath like I'm supposed to.
Since I was told at first that this wasn't neurological I didn't consider it something to worry about. Now that my new and smarter neurologist said there is definitely something neurologically wrong and is checking for MS it scares the heck out of me.
I haven't had it happen in a while but I really don't know what to do if it happens again. The hospital around here is very bad and I know they wouldn't know what to do if I showed up there, unless someone knows enough to tell them what to do. Last time I went there I was told to "quit faking", was given tranquilizers to stop my twitching, and left alone.
When do I consider this an "emergency"? Should I carry some kind of card so the hospital won't do something that will potentially hurt me? If so what should it say? Does anyone else have anything similar to this happen to them?
Any help, support or advice is all appreciated. Thanks so much. :-)
First let me give you a little bit of background so my post makes sense. About 3 years ago I had what I believe was my first MS attack. At the time I was told by the neuro that I either had epilepsy or was crazy. He checked for epilepsy and when it came back negative I was blown off and told to look for a psychiatrist. I continued to have these episodes frequently and I still get them every 2 to 4 weeks.
These episodes (attacks, flare up, I don't know) start with a buzzing feeling that runs from my toes all the way up my body. Then I can't move or talk although I'm still conscious, feel pain, and can hear. I get muscle spasms all over, sometimes they progress to nasty muscle contractions.
The part that scares me the most is that recently when I've had these episodes I feel like I can't breathe. Sometimes it's because my stomach muscles have tightened and it makes it hard to breathe but sometimes I just don't seem to take my next breath like I'm supposed to.
Since I was told at first that this wasn't neurological I didn't consider it something to worry about. Now that my new and smarter neurologist said there is definitely something neurologically wrong and is checking for MS it scares the heck out of me.
I haven't had it happen in a while but I really don't know what to do if it happens again. The hospital around here is very bad and I know they wouldn't know what to do if I showed up there, unless someone knows enough to tell them what to do. Last time I went there I was told to "quit faking", was given tranquilizers to stop my twitching, and left alone.
When do I consider this an "emergency"? Should I carry some kind of card so the hospital won't do something that will potentially hurt me? If so what should it say? Does anyone else have anything similar to this happen to them?
Any help, support or advice is all appreciated. Thanks so much. :-)
You COULD carry something with you that said something like: I get these undiagnosed "siezure" type episodes...but idk I mean what can you tell then they're not going to see with their own eyes should you show up there all messed up? Dang, you poor thing !! Hang in there and keep us posted!!
The stuff I mentioned in the post aren't my only symptoms. I have had two distinctly bad experiences (3 years apart) where my leg muscles contracted and got "stuck" that way. The pain is unreal. The first time it took about 3 months for me to be able to walk again without a cane. I'm still recovering from the second one and it's been about 3 months. I also have a bunch of other symptoms. They don't worry me in the same way the weird paralysis and breathing issue does though.
I'm so frustrated with the tediously slow process of being diagnosed. On the bright side, my new neuro seemed horrified by the way the last neuro dealt with me, so hopefully that means he's the decent sort. Thanks for the support, it's nice to know that someone cares about what's going on with me. :-)
I am having a new MRI done on my cervical spine and just had one on my brain. An eeg, Evoke potential, and yes a Lumbar puncture.
Once it is determined that it is or is not a siesure than he will treat it accordingly.
I don't have the strangulation you speak of and that would worry me. Call the Neuro ASAP and get in there to find out whats happening. The ER cannot diagnos it without the MS records. I tried.
You never said how long they last. I keep a record of them. If more than a minute I am supposed to call him. I have up to 22 a day. Really knocks you out too.
It is my understanding that MS can cause a seizure. That does not mean it is Epilepsy. That fact that we remain consious is good. Not sure why. I am also new but thats what the Doc said.
Good luck. I hope you find the answeres.