Not a Question... Going to my Neuro today

[kel1lost]

Hello all!!!  How is everyone doing?  I pray everyone is doing well.  

I finally got the MRI DVD to download on my comp. and you were so right LULU!!!  No clue how to interpret the pics.  My neuro appnt. is today so I will know much more.  However, It did read on the brain MRI the in two places "flair"  

I'm scared now.  I do not want to go on all the steroids again.  My neuro told me that if I had a relapse I would be on the IVsm for a long while followed by the pred. for like 2-3 months.  

I just started Rebif 10 weeks ago.  Does this mean that if I do have a flair up, that Rebif isn't working for me?  I know from what I have read that it takes like 6m to "comform" to our systems.  

I guess I do have a question.  If she want me to changr treatments, what should I go with.?  She usually gives me the choices she thinks are best for me and lets me have a couple days to think on it.  But I will need you guy's help. because I am new to all this as you know.  

My neuro also siad that if I do have a flair up she would most likely want me to go see an MS specialist at Jon Hopkins or some other hospital.  I don't hear anything about "THE" big man MS specialist.  Lol.  This is all just ... I don't even know.

I know that I need to stop worrying about the things that I am thinking will happen or are happening, and be calm and positive.  Let me hear it from my Neuro.  She's the Doc. not me. :)  This disease does not rule me or define me.  Tis disease does not make me any less of a person.  I'm so much better than to traet myself as I have been.  I am just making it worse for me. I will not feel sorry for myself.  I'm better than that.

I was talking to a police officer here in Celina the other day when I was on the side of a gas station that had closed, and I did not even knoe it had closed.  I was sitting in my cart crying like a baby for like an hour.  So he came up to asee if I was ok and I yes I was so I told him what was goin on with me and guess what...  Hi son had MS and he is 9 yrs old.  That totally helped to change my mind on my situation.  

Sorry about all the babble.  But I know I can talk to you guys about all my stuff going on because you really do care.  Thank you to all of you!!!  Couldn't do this with out you.  Special place in my heart for this community.  Always in my prayers.

Hugs to all,
Kelli

[Jifr]

hi.  If you haven't already had your appointment....Take the CD with you and tell the doctor you want to look at them with him/her.  See if they'll take a few minutes to point out where your lesions and what they look like.

I took my films to a neuro once and we spent a good few minutes going over where my lesions were. I was already familiar with the brain structures so it was just a matter of knowing which white spot or gray spot meant something in terms of the MS.

If you're able to get a basic understanding of what you're looking at - it'll help you when it's time to go in for appointments.  You'll know what to look for ahead of time and then you'll know what to ask when it's time to see the doc.  There will be a lot less time wasted trying to get the doctor to understand that you DO understand.  

At least....that's been my experience.  I hope my recommendation may help.

[HVAC]

Hang in there Kelli

Alex

[doublevision1]

When you saw the word "flair" on your brain MRI this refers to a specific type of technique/ pulse sequence used in MRI.  

FLAIR = "Fluid Attenuated Inversion Recovery."

The wiki descprition is as follows:
"This pulse sequence is an inversion recovery technique that nulls fluids. For example, it can be used in brain imaging to suppress cerebrospinal fluid (CSF) effects on the image, so as to bring out the periventricular hyperintense lesions, such as multiple sclerosis (MS) plaques."


When speaking of a MS relapse/attack/exacerbation, we are talking about a "flare" which I notice is very often misspelled as "flair."  

It can be confusing since these terms sound alike and are both be associated with MS, though are two completely different things.

"Flares" are diagnosed by physicians in light of a patient's clinical signs and symptoms, and sometimes confirmed by enhancing lesions on MRI.  A MRI CD is not going to state if a patient is having a flare.

[Lulu54]

Kelli,
It does take time for these drugs to change the way our immune systems are misbehaving.  In the meantime, the doc can throw other things at you to help, such as the IVSM.

Good for you to take the time to wallow in pity for a bit by the side of the road.  We all need to make those emotional pitstops and take some time to refuel ourselves.  How fitting that you did this at a closed gas station.  


You also know that now you move on and find someplace/something else to fill you up.  The cop shared a perspective that is so true but hard to keep in mind - it could alwayas be worse.  Truly.  And he gave you an excellent example- how difficult that must be as a child and as a parent.

Hopefully your MRI pics made you laugh when you saw them and realized what a futile exercise this can be.  That won't stop you from looking - I look at mine regularly and still haven't a clue, even though I can match them to my radiology reports.  :-)

I hope your appt today gives you some clarity of your situation.  We're here to listen to all the babble you want to share -

best,
Lulu

[Sumanadevii]

Kel, I do know Rebif takes time to start working.  The IVSM treatment is probably being given as a helper until Rebif takes over.  In my case, we worked a year with steroids every three or four weeks without a taper dose...three days each time with one gram doses for each of those days along with the Rebif.   It didn't slow MS down for me.  Without the steroids I was a lump of nothing.  Eventually I crashed hard which is why I ended up in the hospital for thirty days.  I was put on Tysabri and it seems to have slowed things down.  I have had two infusions now.

We are all different in our treatments.  Some of us just have MS that doesn't want to give us a break.  I am sure your neuro has a plan for you.  It may be much different than what my neuro did but for sure it seems she is treating it with aggression.  

I am happy you are staying positive.  It says a lot about your character and that positive attitude will take you far.  Just don't be hard on yourself on days when you want to throw the towel in.  We all have those days and should not be ashamed.  The key is that we pick ourselves back up and go back into battle.

Hoping your neuro settles things for you today.

Sumana