Could Be Worse
 

I went over the results of my latest MRI with my neuro the other day. I have 2 new lesions. He said we'll have to keep an eye on them, we don't want them getting bigger. Well then how do I keep them from getting bigger?? How do I control this? I WANT to know, I NEED to know! I know there really aren't answers, but WHY can't someone figure this thing out???AAARRRGGGHHH!!!!!!!!!!!!!!! Ok, taking in deep cleansing breath......I'm just in a funk, feeling a little sorry for myself. I haven't talked to anyone about it because I don't want to say it out loud. I know it doesn't make much sense, but right now I'm only comfortable using this forum as my outlet. It's my safeplace I suppose. I just adore you all so much, our community does more for me than I could ever put into words, thankfully, with you all, I don't think I need to.:grouphug:~~~Jess

JessieSue,
 

I understand what you mean about using this as your only outlet. I feel that way most of the time. I don't know anyone, in person, who is going to through MS. And it's very hard for people to understand who aren't actually going through it, try as they might! :rolleyes:

I wish someone had all the answers, I really do... "they" say they are getting closer to the answers!!! So I try to hang on to that.:hug:

But, it's okay to be down sometimes... Shoot I got down about things before my dx, so I'm still human... and so are you! WE ARE HERE FOR YOU anytime you want to vent! I have learned there are a lot of smart folks here at NT who know much more than me! Don't be afraid to depend on them!!!:grouphug:

You are in my thoughts and prayers,
~Friend

Come here homey :hug:

Let it out Jessie. My earplugs are in. :D

Thank you both so much! And thank you for accepting my whining with such support!

Awww Jessie, you know we are here for you girl! Lesions are just that, stupid little lesions that serve no purpose but to scare the daylights out of each other. Jim has a ton of them but his last MRI only showed one active one, the others dim. It's the placement of where they are in most cases that really matters in the long run.

I honestly can't imagine what it's like to have something in your body that you have no control over. But we are great listeners!

Come here.

Moose size hug time!:hug:

(Wow. You smell nice).;)

Vent away beautiful. It's part of what we do here. Keeping it in allows it to fester and grow into something worse.

Here endeth the lesson.

Well, theoretically, this is the reason we are on the DMD's, to hopefully reduce the number of lesions and attacks. What drug are you taking, and did he mention considering a switch?

I don't get MRI's as I will not switch my drug of choice anyway. My neuro says "what's the point in knowing then?", and I agree . . . why stress yourself out if you have no intentions of changing meds anyway?

Cherie

I know how stressful this whole thing can be.:grouphug:

Imvho unless someone has a near clear MRI playing the "count the lesion" game isn't always the most productive. Its my understanding that since the images don't have the exact same placement from one MRI to the next, I have heard lesions can show one time and then disappear the next and that different Docs can count different numbers on the same film so I look at the MRI as just one puzzle piece but not the whole picture.


Although in all fairness my "numerous lesions" doesn't really led itself to a solid count so maybe thats why I don't pay too much attention. I do keep getting MRIs aprox. every 18 months just to see in case there is a significant change because at that point I would most definitely change therapies.

Hang in there and please if you find a way to keep them from getting bigger let us know! ;)

Great points, Jules.

Cherie

You are great listeners! Lesions are big fat jerks!

Thanks PE!! I know that I have MS, I don't expect them to say hey you're cured! But it's still a little blow, you know? And it does feel good to get it out here, thank you again PE!!! You Rock!:hug:

Aww thanks Moose!! I needed the big bearhug!! It does help so much to vent on here, you guys are sll so positive and supportive!! (Oh, and that's my new body wash, fresh citrus. It has real orange and mango extracts! LMAO):hug:

LMAO!! I think that's how I'm gonna go now, what's the point in knowing then?! I'm on 44mcg of rebif now, and we've been very pleased with it mostly. It's been my best bet so far, and I don't think I'm changing anytime soon. Time will tell I guess, heehee! :hug:

I have lots of dim or inactive lesions. thankfully none of those are active. The two new ones look like headlights, LOL!! You know what Jules?? I'm gonna turn a room in my basement into a laboratory, and I'm going to become a mad scientist! I'll figure this junk out, none of these other yahoos out there in the medical field testing places are going to! I'll take care of business!!:D:hug:

Go get'em Girl! We are behind you all the way. I will be anxiously awaiting your breakthrough. I got plenty of those darn lesions I'd like to make go poof. :D

howdy Jess:hug: I too would be interested in learning how to stop them from growing, please as soon as you figure it out, i will nominate you for a noble prize
i do believe the downside to winning nobel would be losing the ramones shirt :yikes: might be able to get away with a kinks one

sorry the doc wasnt as thorough as he or she could of been, try not ;letting the lack of ino stress you out, now go crank rock and roll radio and relax

I'm PPMS, my neuro never sends me for MRIs, what's the point. Upsetting me?

remember too jess that it's not just the lesions and the count that's important.
but, rather how you're doing clinically.

sometimes you can have lesions and be stable and other times have no lesions and be very symptomatic.

i'm rooting for you.

Hey Jess

Judy has a good point. I've had no new lesions for awhile, although since I've been in this clinical trial I've not seen my MRI for over a year, but I've got one that is pretty active all the time. It's the one that gives me the most trouble and is most symptomatic. I keep asking my neuro for a lesionectomy but she says no one has come up with that procedure yet!

While the number of lesions isn't necessarily important, where they are is...I guess it's where this one is and it's activity.

So, don't focus on the number, focus on staying STRESS FREE, and healthy, and vent away here. ;) We need you as much as you need us! We all support each other. So, Little Jess...get that mad scientist kit out and figure out how to perform that lesionectomy procedure! You've got a mission now!!!

:hug::hug::hug::hug:

Jess, hope you are doing a little better today :hug: I think we all need days where we feel sorry for ourselves. That is why we are here, to listen. I like the idea of your little lab...if you need an assistant, I am all yours :p

Thank you guys so much!!! I'm happier today, I've been so moody, especially with Dennis. I'm just gonna make myself shape up! After all, though sometimes I feel like it, I know I'm not alone, and I love you all for reminding of that! Here's a little peek of me hard at work.....:grouphug:

http://i48.photobucket.com/albums/f2...lisRotwang.gif

Oh and Frank, thou shalt not strip me of my Ramones t-shirt! LMAO I have a Clash t-shirt that has a few less holes........OOOOHH......or maybe I could just "Bedazzle" my shirt to make it fancier! And you can be my date to the ceremony and you could wear one of those tuxedo t-shirts!!!! LMAO! :D

Ok Jess. I just got an idea for a product we could invent.

LESION-ON Put directly on the lesion! :)
LESION-ON Put directly on the lesion! :)
LESION-ON Put directly on the lesion! :)
LESION-ON Put directly on the lesion! :)


"I hate the commercial, but I :Heart:LOVE :Heart:the product!!!" :winky:

Hope this makes you smile Dearie! :hug:

Hiya Jess,
I'm right there with you. I go for an MRI of my brain on Wednesday and even though it isn't my first, I'm nervous about it. I haven't had an MRI in about 8 years as my neuro isn't one , at least with me, who wants yearly MRI's. I expect it definitely will be a be a bit worse. I mean, how can it not be after 8 years? ( I have been on Copaxone religiously ever since diagnosis though) I wish the contrast instead of showing lesions light up, would be the thing that cures us. LOL Wouldn't that be wonderful?
It's ok to feel sorry for yourself. We were all dealt a bad hand and did nothing to deserve the MS.

I LOVE it Wiz!!!!! And I want to record it so it plays over and over in my neuros office! Oooh!! Or we can use it to drive the powers that be crazy so that they'll give us all the funding and resources we need to cure this crap!! Luv Ya Wizzer!!!!:hug:


First I'm going to investigate ALL the components of chocolate and their positive and negative properties. And then, if there's a God in Heaven I'll find the cure in a decadent hunk of fat free, calorie free chocolate! And we will have to eat chocolate everyday to remain MS free.....I know, it's torturous, but I'm willing to take one for the team and try it out first.LMAO:hug:

LMAO!! I know, right? How hot am I???:D:hug:

Jess~ You are always there for everyone, so let us hold you up on our shoulders when you need it. Your'e entitled to get ticked off once in a while, but you always seem to let your fun loving personality shine through, even when the going gets tough. hang in there girlfriend.

http://dl10.glitter-graphics.net/pub...jgawgkmbmb.gif

What a creative and funny crew! I love the "Lesion-On'!!! Its great to have a laugh and a smile! Thanks.

Well DM, I've learned by example! I know when I need to laugh I can read something you've posted and it's pretty much guaranteed to work!! What would I do without that that crazy banter between you and AMN?! And you and Flygirl?! And you and.....well....pretty much all the rest of us that pick on you?! LOL:hug: You know it's just because we all LOVE YOU so much!!!!:D

I know it Starfish!! These people are friggin' creative huh?! I suppose a whole bunch of partial brains just come together to make one big, complete, highly functioning pile of laughs! LMAO:D

Jessie, while I am drooling over Kid Rock this Friday I will ask him about funding. K?

Wait wait wait......WHAT???????????? How? Who? When? Why?? Answer me woman!!!!

I have tickets to see Kid Rock this Friday on his Rock and Roll tour. lmao We will be seated to the left of the stage in the bar area. I am thinking he may come in there for a drink? So, I will network for your cause OK? It's the least I could do. LOL

LMAO!!!! Ummm, I don't think that was what Jim had in mind when he thought about threes. lmao

I know BB.....I don't know why but I have a terrible time showing any weakness. And to me, when I'm down, cry, or seek others hold me up, it's a sign of weakness. I know that way of thinking is erroneous, but I've felt that way for so long it's been hard for me to break free from it. Love Ya Bax!!:hug:

Well, Jess, it may be time to name them. They have lives too, ya' know. You could name each one after a jerk, or an ex-president, or a really uncomfortable shoe, or that beotch in jr. high who put nasty notes into your locker vents, or hey! what about that chick in 4th grade who thought she was a horse and clumped around snorting on the playground?!?!?!

I took a film once and put ugly faces and mustaches on all my lesions with a Sharpie.

Cool idea!
Let's see..That sneaky lil' one in back I'll name after my ex (won't mention names,lol)..The one that shows up on the left every now and then, one of the jerks I used to work for (as soon as I remember his name, he'll be immortalized on film)..And then of course that big blow hard who likes to be in charge, always shows up on top..Think I'll name him "W" for..well, you know.:p
I needed a creative hobby. Thanks AMN~

Holy Cow! That's genius AMN!! There was this chick in junior high and I kid you not, she wrote me love poems and slipped them in my locker. I remember one in particular was called "Love is like a circle".:eek:
And PE, I have a few exes worthy of being honored as lesions. Especially Andy, he was always coming up......ehem......short.......in so many ways!:D
Actually, I need more lesions to name all the jerks I know! Oh, and Cin, we DID have that girl in 4th grade! We called her Jabba (jabba da hutt). She really looked like him! I know, that's mean, but she was a mean kid!

:ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :ROTFLMAO: :ROTFLMAO:

Cindy that is a perfect idea! I love it. I am going to get to it and start naming. :p

AMN's a frickin' genius like that! She's very creative and has a wicked sense of humor! It's an awesome combination!! :D