Luck ran out

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Postby Lyon » Mon Feb 19, 2007 4:42 pm

viper498 wrote: I am going to try to not sweat this symptom to much, although I still need to go to the doctor and the neuro and let them know.
Personally I think that's a good idea. It sounds like you don't have obvious relapses, at least at this point, even though there might be enhancing lesions forming. I think that's also what's going on with my wife. No symptoms/not obvious symptoms, but new lesions are showing. Even though there's not really anything useful that can be done about it at this point, that's something you'll want to know so that you can better decide your future course.
viper498 wrote: I'd be curious what an MRI would look like right now?? The last MRI i had showed no activity, and just a little of the original damage. I wonder if I'd have a lot of enhancing lesions, if in fact it is MS that is causing this little problem.
I've wondered the same things. Just a gut feeling but if it's something you've never experienced before it seems that it would be something which might show up on MRI. If it is a replay of something you've experienced before but is brought on by of sickness, tiredness, heat, stress, etc... it seems that it wouldn't show up on MRI but instead might be caused by already weak circuits made weaker because of the above conditions.

It's none of my damned business and it's hypothetical but if the Tovaxin trial had a site in Missouri, might you have considered it?
Bob
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Postby viper498 » Tue Feb 20, 2007 5:58 am

Lyon,

I was actually just looking in to that. There is a Tovaxin site in Lenexa, KS, which is about 2 hours away from me. I am up there in that area all the time to visit my dad, so if I could get in to a trial, or something, then that might be good.

Has anybody reported any benefit from it yet?


I hate this damned disease. I really feel for all of us. Thanks again Lyon!

Brock
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Postby Lyon » Tue Feb 20, 2007 7:26 am

viper498 wrote:I was actually just looking in to that. There is a Tovaxin site in Lenexa, KS, which is about 2 hours away from me. I am up there in that area all the time to visit my dad, so if I could get in to a trial, or something, then that might be good.

Has anybody reported any benefit from it yet?
Hi Brock,
Loobie's been treated two or three times. Since it's a placebo trial it's impossible to REALLY know if what he's experiencing is placebo effect or benefit from being on the real treatment but he does seem to be experiencing something http://www.thisisms.com/ftopic-3618-day ... asc-0.html

I hope you know that I wasn't trying to talk you into anything...BUT if this is something you really do want to consider there are multiple people here registered for the trial so if you have any questions or concerns they could probably help you out.

Bob
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Postby viper498 » Sat Feb 24, 2007 9:57 pm

So I went to a Brand new neuro on Friday. He was actually a lot better. He told me that the feeling that I was having in my leg was most likely due to MS. He also ordered another MRI (this makes 3 in two years).

Unlike my last neuro, I talked with this doctor for probably 45 minutes. It was refreshing, much like this forum and the people who are participate in it. The one draw back is that he basically scorned me in to starting one of the CRAB's again. So I have. I started my injection routine (Rebif) Friday night.

I asked him about Minocycline, and he was aware of it, and actually seemed like he was interested and hopeful of it. He said he wouldn't take it alone, but in combo with a CRAB. I've been eating a little crow on all of this. So I'll keep an open mind, as I usually try to do.

I e-mailed Dr. Luanne Metz, of the Hotchkiss Brain Institute (Canada) regarding minocycline trials. She has been a big part of the minocycline studies, and unlike a lot of people I e-mail, she has e-mailed back. I hope she does once again. She focuses a great deal on research, and she works a lot with Dr. V Yong. Google her name, it returns quite a few hits. See link...

http://www.hbi.ucalgary.ca/sections.php?sid=2&cid=77&saved=1

Brock
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Postby Lyon » Sat Feb 24, 2007 10:14 pm

I'm glad you seem to like your new neuro Brock. If you're comfortable with what you're doing, who is anyone else to second guess you?
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Postby sh8un » Sun Feb 25, 2007 8:30 am

Hi
Dr. Metz comes to my unit every so often when we have a neurology pt. She is really nice. I have never had enough guts to go up to her and talk about my MS as she seems pretty busy when she is on the unit.
NN
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Postby viper498 » Sun Feb 25, 2007 11:27 am

Sh8un,

That's cool! She seems to be a very respected MS researcher. I am sure she is very busy. She has usually found time to reply to my e-mails though. I hope she is able to this time as well. That would be an honor to meet her. Your lucky. It would be even better to sit down and talk with her about MS.

Brock
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Postby sh8un » Sun Feb 25, 2007 3:33 pm

Hi Broc,
I am pretty lucky to have met her. I think that next time I see her I will talk to her about thing. She doesn't come around often though which is too bad. She probably goes to the neurology unit a lot more often. Anyhow, hope she answers your email. If not, You let me know. I know where her office is
:lol:
NN
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Postby viper498 » Mon Feb 26, 2007 11:49 am

That would be funny! I am sure she wouldn't think so though. I won't badger her, but hopefully she does reply. I am hoping that there is some newer results on the minocycline trials she has been overseeing.

Brock
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Postby viper498 » Wed Feb 28, 2007 7:47 am

Does anyone know if there is any research/statistics that indicates what the odds of my disease course will be since I've had two symptoms in less than two years? Or would that be purley speculative (as I imagine it would be).

I am sure everytime anyone of us has an exacerbation, it makes us think (AGAIN!), so I start this whole stupid process of worrying, and sadness again. I hate this feeling. My symptom is so minor too, and it has tapered off, but is still existent, and it does scare me. I just can't help but to wonder if it means I will have a more severe disease course.

Brock
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Postby robbie » Wed Feb 28, 2007 8:14 am

just stay as busy as you can viper, i'm sure there is a statistic on it somewhere just like everything else about this shit but it's just about how you feel right now. My doc said that usually how u do in the first five years tells how the ms willl carry on, i did really good in the first five but now look at me so whatever, plan for the future now while you still got it..
Had ms for over 19 years now.
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Postby viper498 » Wed Feb 28, 2007 8:21 am

Robbie,

When you say you did well in the first five years... Does that mean you had zero relapses? How about now, how are you doing?

Its hard to plan for the future when you have this hanging over your head. You know how it goes. I mean I am 27 years old, my job is going great, I am in school, I keep busy, but I don't know what is going to happen with MS. I mean this little symptom, where the f*ck did it come from? Why did it start in the first place? I mean wow. Its amazing that our bodies could betray us like this. There was no rhyme or reason why my relapse occured.

Brock
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Postby connieb » Wed Feb 28, 2007 9:07 am

Brock some anectodal evidence to cheer you up-- I personally know two women (one of them a relative) who've both had MS for over 20 years. To make a long story short, and completely contrary to conventional medical wisdom, they both tell me that their darkest moments were during the first 10 years of their disease-- they both ended up hospitalized and on steroids a few times. Neither one of them currently has any physical disability, although my relative does have issues with dizziness (not incapactating though). They both took some DMDs when they first became available but then stopped as they didn't feel that they've made a difference. Not a statistically significant sample, I know, but it does show that Robbie is correct in implying that the 5 year thing is, like many things with this disease, just a best guess.
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Postby viper498 » Wed Feb 28, 2007 9:16 am

Connie,

Thank you for this information. I guess it is true that there is no real predictor for ones disease course. I am sure the more I worry about it the worse off I will be, if for no other reason because my state of mind is in the dumps.

Thanks again Connie...

Brock
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Postby Lyon » Wed Feb 28, 2007 1:49 pm

Brock,
An excerpt from the NMSS site. The last paragraph of what I copied and pasted is the important part.
Bob
Prognosis

From The MS Information Sourcebook, produced by the National MS Society.

It is generally very difficult to predict the course of MS. The disorder varies greatly in each individual but most people with MS have a normal life expectancy. Nevertheless, a few patients with very severe disability may die prematurely of infectious complications (such as pneumonia) so that the overall life expectancy is only 95% of normal.

There are some guidelines that may be used to infer prognosis. Several studies have shown that people who have few attacks in the first several years after diagnosis, long intervals between attacks, complete recovery from attacks, attacks that are sensory in nature (i.e., numbness, tingling, visual loss), and nearly normal neurological examinations after 5 years tend to do better. People who have early symptoms of tremor, in-coordination, difficulty in walking, or who have frequent attacks with incomplete recoveries, early development of neurological abnormalities, or more lesions on MRI early on, tend to have a more progressive disease course.
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