Luck ran out

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Postby viper498 » Wed Feb 28, 2007 2:07 pm

Hmmmm, I am not sure if that fares well for me or not according to the NMSS. My first and second exacerbations were sensory in nature (first one was Visual, second one was Numbness on skin). They happened just under two years apart from each other. The first one I recovered 100% from. This second one, well the Jury is still out. I do still have some minor numbness, but it has definitely subsided.

My MRI show probably 10 lesions, and my CSF tested positive for Oligoclonal bands.

So what does that mean??? according to the NMSS anyway?

Brock
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Postby Lyon » Wed Feb 28, 2007 2:11 pm

viper498 wrote: So what does that mean??? according to the NMSS anyway?
Brock
That's why I didn't give much of a narrative. I don't have a clue. I will say that in reading it I got the impression they were talking about much more extreme situations than yours, and my wife's, whose is similar to yours.
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Postby viper498 » Wed Feb 28, 2007 2:28 pm

Well I appreciate the post. Thank you!

Brock
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Postby Lyon » Wed Feb 28, 2007 2:55 pm

Good things are on the way Brock and at this moment the name of the game is buying time by minimizing disability so that you're in as good of shape as possible when things come together.
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Postby connieb » Wed Feb 28, 2007 3:35 pm

I was diagnosed with 15 lesions, which to me sounds like a lot, but every MS specialist who's seen my MRI thought that the changes on the brain were in fact minimal. So I suppose it's more than just the number of lesions? Maybe size and placement also count? I really have no idea how it all gets evaluated-- maybe it's based on their experience of looking at tons of MRIs, which is why it can be hard to understand how generalizations apply to one's individual case.
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Postby Manchester » Wed Feb 28, 2007 3:50 pm

Number of lesions often means much less than type of lesion and where the lesions are located in the brain. For example, whether they are T2 or T1 lesions, if grey matter lesions are involved, if the lesions change over time etc.

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Postby Lyon » Wed Feb 28, 2007 3:52 pm

That's an interesting subject Connie, and one I wish I knew more about. My wife was diagnosed about this time last year with "at least" seven lesions, yet only that last one cause slurred speech, which was the reason we ran her into the emergency room. We never previously noticed ANYTHING odd. About a month ago an MRI showed a new lesion....with no obvious effect on my wife.

I've got my suspicions but why some people experience devastation in their first lesion and others experience a little problem every six or eighth lesion is a mystery to me.

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Postby Manchester » Wed Feb 28, 2007 3:54 pm

Number of lesions, according to my neurologist means much less than type of lesion and where the lesions are located in the brain. For example, whether they are T2 or T1 lesions, if grey matter lesions are involved, if the lesions change over time etc.

I have around 7 lesions on my last MRI, albeit a while ago, and my doctors were not exactly bothered about this as they were clear it's is not quantity but err, quality!

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Postby sh8un » Wed Feb 28, 2007 7:02 pm

When I was diagnosed, they didn't even bother finishing the count of my lesions that made me feel like I was a lost cause. the findings just says greater than 10 mostly in the preventricular area. I really have no idea how many I have. My neuro app is coming up so I will ask. The last year has been kind of hazy for me. I have not really wanted to know more than I can handle.
NN
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Postby viper498 » Tue Mar 06, 2007 12:16 pm

I got some information on the results of my MRI from last Thursday that inidcate that my lesion load has doubled. It really depresses me. :( Life is hard enough with out having to with this. I have no real symptoms currently except for some very slight numbness in my right foot. The last MRI had shown no new activity, this MRI took place in July of 2006. I can't believed that I've doubled my lesion load in such a short amount of time.

I wonder what next? I wonder what will stop working on me, and when? They keep preaching get back on the REBIF and don't stop. I am still skeptical, but I still do it because I am scared.
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Postby Wonderfulworld » Tue Mar 06, 2007 1:18 pm

Brock
thinking like that is the slippery slope to real depression. I know becuase I was equally panicked about everything when I was dx 9 years ago. Even now I occasionally get a bout of panic when I think about MS and it marching along with me.......8O

The thing is you have a good chance of halting/slowing the progression on a CRAB, especially as you are catching it early, and not leaving it to an attack of paralysis like I did. Even still, 9 years later I'm doing very well indeed, so all my worrying for nowt. I was told I had so many lesions my brain was like a "chequer-board" and that really freaked me out. All the new lesions you have may equally have disappeared a month from now, or will remain clinically "silent". Sometimes, not knowing how my MRI's are is positive I think. In Ireland we don't tend to get MRI's frequently as the neuros feel it doesn't necessarily link up with progression or disabiity load, so it doesn't exactly tell you much. Your functioning, your mobility, your intellectual functioning will all tell you much more.

We're all doing this coz we're scared! But yesterday my neuro told me they are trialling pill form interferons (sadly no copaxone pill, I'm on cop
:cry: ) so maybe that will be a positive on the horizon for many of us.
Take care
WW
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Postby robbie » Tue Mar 06, 2007 2:02 pm

Brock this is a progressive disease and you haven't progressed, who cares what the MRI shows they don't mean shit anyway. Just live now while the goings good, make the near future the best time in your life, you are in control for now, still working , walking ,having fun with your g\f just make it happen. My biggest regret is letting it get to me early when the symptoms were just an inconveience, i wasted time being pissed off at my numb hand or foot or lazy eye and had now idea what was really on the way. Maybe down the road your life will be a mess but right now live man...
Had ms for over 19 years now.
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Postby Loobie » Tue Mar 06, 2007 2:48 pm

That is some sage advice Robbie. Do what you can while you can. Work until you are absolutely unable, play until.... you get the theme. I have a friend whose 20 year old daughter was dx'd two years ago and the neuro. told her that she had "hundreds" of lesions. She is still a cheerleader at Tennessee State, so what everyone is saying is right. Don't worry about the number of your lesions. If they don't result in symptoms, who cares? Now I have never heard of anyone else described with hundreds of lesions so my buddy may have been exaggerating, but I had Optic neuritis, a bladder that was screwed and numb feet and after my first MRI I was told I had no lesions.

I guess I have around seven now but still have the same bag of symptoms. How you feel is so intertwined with your attitude it's not funny. You don't have to go climb Mt. Everest or anything but don't let it get on top of you like that until it's really on top of you. I was going through some of the same stuff as you at the beginning of my disease in that I was diagnosed but really didn't feel sick except for my eyes. I would get on these forums and in chat rooms for MS and, for me anyway, I would not stick with it because it was not good for me to dwell on it for exactly what you are describing. I was getting too caught up in what MIGHT happen. Until it does, live it up.

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Postby sh8un » Tue Mar 06, 2007 8:56 pm

Hi Brock,
I have to say that I totally agree with WW. do not worry yourself with lesion load. I think that it is an awful thing that in the US they have yearly MRI when there is not a damn thing that they can do about the results of them. They sure make money off ppl though. In Canada, we do not have yearly MRI for the fact that if it is not causing disability, there is nothing that can be done about them. They are not harming you. In my opinion, it's very hard on a person to have to know how many lesions they have. it sends you down the wrong road. Also, WW is right that the brain does repair, even with MS. Not always as much as we would like it to obviously, but it still does. Especially with RRMS. I went to my neuro app. I actually did not ask about my lesion load. I even told her that I did not want to know. I know I have MS. I know that Avonex is some help. I eat healthy, yoga and meditate. I do all that I can with the knowledge that I have. Only tell me something when there is something I can do about it. Otherwise, I'll just fly high off my placebo buzz thanx. Having said that...I can see that this is a hard time for you and I hope that things work out for you.
NN
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Postby viper498 » Wed Mar 07, 2007 7:55 am

Thanks to all of you. You don't know how much appreciate the feedback and support. This is the only place where I can get good support from people who understand, and where I can really be open about what I think and feel. It is a lot of help to me. I do feel better about all of this, and I also realize that this is a cyclical thing that will probably occur again after another relapse. I guess it is part of the "dealing with it" process.

Thanks again!


Also a special thanks to Aaron and anyone else who was invovled in this site's creation and upkeep. You really have an amazing thing going here. This site is a part of my life, and has been since the day I became a member. I check this site everyday, and usually multiple times per day. I don't post much, but I take in loads of good information from your seemingly dedicated information miners (Ian, Dignan, and countless others), and the members are all great people, what a neat community!!!

Brock
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