First official "episode" and questions

[ccorina]

Hello all,

I was a limbolander with come and go symptoms varying in severity for the last year (well more like 20 but the last year they tried to figure it out at least!).  I had a hemiphelegic migraine a year ago (so they say) and lost rightside everything for a day and then lingering effects for almost a year (I don't think that happens with migraines)

Now just before Christmas, my entire left-side went numb even my ear and head.  I also had face droop.  Definite stroke symptoms so off to emergency.  Well it wasn't a stroke.  Finally a neuro took me serious and did a mri of head a c-spine with and without contrast (on a 1.5 - I think its the best you can find in Saskatchewan, Canada).  

It was at a university hospital so lots of residents so I think htat makes them try harder.  They said I have an enhancing lesion on my pons and some other (he actually waved his hand here) things but the important one was the pons.  The differential was a brain giloma, but 3 Neuros said with my history it's MS but we can only say
clinically isolated syndrome until more evidence.  They did an LP but didn't have results when I left.

5 days of steroids IV and then they told me to go home.  Gave me a walker and a seat for the bath.  I was told i would be told everything before I left (by a resident) and given a plan.  I wasn't.  They just sent me home.

Now I feel like **** and still have lots of issues.  Is it the steroids or the episode?  How do I know.  Should I have med problems after I've been off?  I stopped on Thursday after 5 days of 1 gram.

Also, what now?  I know nobody knows but what advice do they usually give you?  I'm sitting here barely able to think or type or anything and I get exhausted walking to the bathroom.  How long til I get better?  I know you can't answer that but I'm just saying these are the kinds of questions in my head.

I'm scared and ticked off at the same time.  Thanks for listening

Corina

[anon07072023]

I'm sorry that you're having to go thru all of this.  I guess, it's good that at least it's not a brain giloma.  For me, I think that would be even more scary than MS.  

The IVSM always makes me feel like c r a p, too. So, what you're feeling now, may be from the steroids.  I can't say how long until you feel better. IVSM never has helped me - but I'm one of those ones who's symptoms just started one day, and they just continue to get worse.

I'm with Sadie, if you have a regular doctor, maybe make an appt to go see them. Then hopefully they can help you figure all of this out. Did you meet a neuro of the 3 that you were speaking about that said that they wanted to follow you thru this? Then I'd make an appt to see them.

Good luck,
Kelly

[sadie405]

Oh man-- of course you're scared and upset. First of all, please be very easy on yourself-- whatever the cause, your poor body has just been through the wringer.

Second, it seems extremely strange that you were sent home before they scheduled any kind of outpatient follow up, had a final talk with you and/or your family with specific instructions/a plan, etc.  Do you have a primary care physician who could go to bat for you and track this stuff down?

The good news is they are taking you seriously, and something showed up on MRI. Did your symptoms abate with the steroids?

Hang in there, and let us know what happens.

Best,
Sadie

[Lulu54]

Hi Corina,
You have every reason to be scared and ticked - is it possible to contact the hospital and ask for your discharge plan?  Did they at least let you know about your follow-up medical care?  

The residual effects of the steroids can last quite a while and add to your feelings of agitation.  If you continue to feel poorly be sure to call the doctors and ask if there is something they can prescribe to help with a taper off the steroids.  

I have a friend who has hemiplegic migraines and has a facebook group on the topic - I understand they are pretty rare and from your history I would think you would have them more often than once or twice.  I would set that HM thought aside, too.

I would push for the MRI to be looked at to see if there are old lesions versus the new activity. CIS here in the states can be treated with drugs and I hope they do the same in Canada.

welcome back!
Lulu