5 days in hospital, and glad to be home

[maestro1959]

I am finally home after a 5 day stay in the hospital.  I collapsed at physical therapy.  I was simply walking with a walker as we have been doing to work on being able to ambulate a bit out of my wheelchair.

According to my physical therapist I was doing quite well when I suddenly asked to be helped back into my wheelchair.  I just got really weak.  When she tried to ask me if I was alright, I could not answer appropriately.  So, they quickly got me onto a mat table where they could check me out.  My blood pressure was high, but that was not the main problem.  My eyes were jerking back and forth, and were not tracking (nastagmus ?) then my eyes would roll back and I would "go away" for several seconds.  Then, I began a jerking movement in my whole body.  This went on for about 30 minutes.

The only thing I really remember is fighting with them about going to the hospital and, worse yet by ambulance.  I hate having that kind of attention.  Finally, they just said, "Bethany, you are not thinking clearly so we are making the decision for you.  You are going, and an ambulance has been called.  The EMT's had a terrible time getting an IV started, as my veins had clamped down.  It took them another 30 minutes sitting in the parking lot while they fought to get a line going.  Eventually, they got that started.

After many tests of every imaginable kind I learned that my heart is in terrific shape.  My carotid arteries are squeaky clean.  My neurologist and the rest of the team determined that I had a seizure.  I learned that about 5% of people with MS have some sort of seizure activity.  Mine was mild to moderate, and he said I may never even have another one.  He has placed me on a low dose of a mild anti-convulsant, and said we will watch it closely.

My question is:  My diagnosis was primary progressive.  If I am having this kind of stuff happening, could this be viewed as a relapse that may indicate that I have another form of MS that may make me eligible for one of the Disease Modifying Drug?  The one good thing is that the MRI indicated that there has not been any further progression of the disease since my last MRI.  Also, do I need any of those drugs if there has not been disease progression?

I would appreciate any input.  Thank you.

Beth.

[Wobbly]

my goodness, it does sound like a seizure and I get spells where they thought it might be seizures and I'm Dx as SPMS, I got Dx later in my age, but had some symptoms for years and never looked into why I had them.

hope you feel better soon
wobbly

[anon07072023]

Hi Beth, I'm glad your out of the hospital.  And it sounds like you are, too.  It's good that they convinced (forced ;-)) you to go, because it may have been something very bad going on with you.    

I have a Dx of RRMS, but I've never had a relapse - so of course I think I have PPMS.  It seems like every time I start a new neuro, they think I'm in a relapse & want to start IVSM on me.  I always tell them that this is how I always am or worse, but of course they don't listen.  My symptoms continue to progress, yet, my MRI has had little to no changes (like you).

I believe that you can have seizures and still have a PPMS diagnosis.  Are you taking Ampyra or any other med that might cause a seizure?  I've had complex partial seizures where I remember being at one place then next thing you know, I'm somewhere else and have no re-collection of the time in-between.  I've never mentioned it to my neuro - perhaps I should.??  

I think that neuros don't really like to list people as PPMS because it limits what insurance will pay and other things.  I'd think that if your neuro Dx'd you with PPMS, then you really do have it. But then again, what do I know.  

What type of seizure did you have?
Take care,
Kelly      

[luvnGod]

So sorry to hear you are going through such an ordeal Beth.  I don't have too much to offer here except to say that I will be praying for you.  I can only imagine how scary that must have been for you, but what a blessing that those around you cared enough to make sure you were okay.  

I would definitely clarify any questions or concerns with your neuro.  You need to know what is and can be offered for you.  Again I will be praying!

HUGS and prayers
Stacie

[jensequitur]

With MS, it's hard to tell at first what's going on.  If they've diagnosed you with primary progressive, it's because you show signs of white matter disease without relapse and remissions.

Since your MRI showed that there hasn't been any new lesions since your last scan, any changes to your brain have been due to axonal damage without lesion formation.  This happens a lot with people with primary progressive MS.

Unless you are actually experiencing a relapse - new or old symptoms that have gotten worse, and are sticking around after 24 hours - then I would say this is existing damage.

As a rule, they don't give the DMDs to people with PPMS.  I think this is because the disease process is poorly understood.  They've shown that Copaxone can slow brain atrophy as well as lesion formation.  This is something you should discuss with your doctor, because he'll have some insight on why you haven't been given the drugs.

Did they give you Keppra?  It's worked great for my myoclonus, although I still have problems.