NeuroTalk Support Groups - Could Be Worse

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I can only speak for myself here..It's not so much the "count the lesion" game (though I understand and agree with what you're saying)..It just lets the air out of my sails when I hear there are more. I know control is an illusion (and not just with MS), but it's disheartening to do "all the right things" and still have this happen. I get over it, for sure..But it's still a bummer.

Quote:

Originally Posted by SandyC (Post 281592)

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!

You are great listeners! Lesions are big fat jerks!

Quote:

Originally Posted by PolarExpress (Post 281666)

I'm sorry Jess..I have an appointment with my neuro next month to go over my latest MRI, sporting at least one new lesion (I just didn't ask when they called). You're not whining! It's good to be able to get out whatever you're feeling to people who've been there..We're all here for each other, that's the whole point of this forum, isn't it? :hug:

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:

Quote:

Originally Posted by MooseasaurusRex (Post 281671)

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.

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:

Quote:

Originally Posted by lady_express_44 (Post 281722)

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

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:

Quote:

Originally Posted by Jules A (Post 281739)

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! ;)

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:

Quote:

Originally Posted by JessieSue (Post 281812)

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

Quote:

Originally Posted by lady_express_44 (Post 281722)

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'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