questions?

I am attending a Shared Solutions MS talk this evening and wonder if you have any questions you would like me to try to get answered? Just let me know and I'll give it my best shot..........

[kwarendorf]

"best shot"? I like it : - )

[PastorDan]

Yeah, what Kyle said.

Is this talk over there somewhere, or anywhere you'd like to share?  Guess I should first ask if it's open to anyone, or did they only invite those with hallway-skating credentials?

[johnniebear]

Thanks for asking,,

My question I've called them before and spoke with a nurse,  I would to know what they've learned about RIS.  and to treat or not treat..


thanks
John

[Lulu54]

JB - I think we can draw straws on that one 'should we, shouldn't we' - seems like you are doomed to stay in limboland for a longer time.  



PD - I'll have you know those were aquatic skills I was practicing and not skating.  Same difference though - it still hurt!!

Kyle - a shot of anything would feel good right now but afraid with the vicodin I am stuck with the kiddie drinks

[johnniebear]

thanks so much,,,


I know there isn't much out there on RIS   I've come to terms with this and  I watch these lesions slowly churn  and stumble around my brain and on my spinal cord.  

I'm seen by the MSlogist every six months and they are just a phone call away should I  need something,  the MS nurse   gave me her work email address after the last visit.


Even  better is the support on this forum and friend here...

thanks
John

[Lulu54]

JB - the good doc tonight, and I really did like him and his open style - said to tell you be thankful it is just RIS.  And he meant that in a nice way.  He said if you had 100 neuros in a room, 98 of them would want to wait and see about any change in your MRI, or clinical exam before starting you on a drug.  He said they don't know enough yet about RIS to make  safe guesses for treatment and you are much better off not doing anything.  

He said you should be seen every six months - which is what your doc is doing. He also acknowledged how frustrating it must be to have found those lesions and then not know for sure what to do for them, unlike CIS which begs for treatmnet.

One added thing he came back to was he told me to tell you to take Vitamin D.  He thinks the neuroprotective nature of D is especially beneficial in RIS.  He repeated the take D instruction a couple different times in reference to your situation.  He said the optimum range for D is 50-60 - have you had your blood checked lately?


As I said, I really do like this guy - it was the first time I had met him and heard his talk.

best, L

[JaneK1975]

Hello folks. I'm being curious. What's RIS?

[twopack]

RIS - Radiologically Isolated Syndrome

It is characterized by incidental MRI findings suggestive of MS in people who don't have MS symptoms.

[twopack]

Hey Lulu.....

Since this was a SHARED SOLUTIONS presentation I'm guessing it was a different type of "SHOT" that had Kyle smiling.

[Lulu54]

Blame it on the pain killers, Mary.  Although a shot of copaxone might take my mind off this, too. Feeling a bit dense right now.

Jane - RIS - think of all the people you know who are minding their business and then have some trauma that requires a quick MRI shot of their head.  The radiologist goes 'whoa!  there's something there that might look like MS' and the patient is referred to a neurologist.  Neuro looks and says 'I see the spots but nothing in your exam supports MS dx.'  It is happening more often from what the doctor said and understandably frustrating to the JB's of the world who are stuck in limbo.

[JaneK1975]

That makes sense. Thanks ladies! Lu, I'll think of you tonight when I take my shot of Copaxone and nip of whiskey ;)