newbie with lotsa questions...
 

:confused:
Hello everyone,

I'm a newbie... just diagnosed with the final deal last week. They're about to start me on a DMD, but I'm having a terrible time deciding between Avonex and Copaxone. Is one really any more effective than the other?? Or am I just trading side effects and injection convenience? I can't seem to find any literature that compares the two drugs on the same terms. Does any of you have any insight that you could share with me? Thanks, in advance!

Also, I'm a totally healthy 30 year old woman; my only symptoms as of yet have been tingling of my toes and numbness in my hands. However, the brain MRI showed between 30 and 35 lesions in my brain. None were found on my spinal cord, and no O bands were found in my CSF. My question is this - how many lesions to y'all (yes, I'm from Texas :)) have? Is 30 a lot? The doc said that it's likely that the MS has been attacking un-eloquent areas of my brain since I was a teenager. I know that's really rare - that most people are diagnosed between 20 and 40, so I also worry that my version of MS could be rabid (for lack of a better term). Does anyone have thoughts on this?

Thanks again so much for being here for me to torment with my many questions. :D

It's not the quantity of lesions, it's the quality of lesions. You can have a ton of lesions and hardly have any disability, or you can have a couple of them and have serious problems.

It depends on where they are.

I have two lesions on my spine. I have no problems walking. I have numbness on the sides of my feet and in my toes, and this morning I woke up to a numb hand (feeling came back about an hour ago in the hand)

I have yet to have any paralysis. So, apparently those two little lesions are only causing me sensory symptoms, and not motor problems.

My brain MRI couldnt find any lesions, but I had optic neuritis as one of my presenting symptoms. So, I'm guessing that I must have a lesion somewhere on my optic nerve, but heck if they couldnt find anything but two little white "dots", that were "not indicative of MS" in my left frontal lobe on that same MRI.

MS is a weird disease...sometimes it does things that make no sense.

Oh, and to answer your question about which DMD to use. Doesnt really matter...if you take one and you're allergic to it, or if it doesnt seem to do much for you, they'll just try you on another one till they find the one that works.

I went with the one that had the least side effects to start out with. I'm on Copaxone. I'd rather have little bee sting reactions to injecting every day, rather than several days of the "MS Flu" from one of the other DMD's.

I'm hoping to convince my neuro to let me try LDN (Low Dose Naltrexone)

oh, and I have some suspicions that I might have developed MS sometime during my childhood or teenage years. I have no evidence of that tho...just an experience with vertigo for a month or two when I was maybe 11 where I was dizzy everytime I rode in my dad's Volkswagon Bus. (pre-seatbelt law days) I had to lay on the floor of the bus to keep from being sick everytime I got in it.

My parents thought it was a weird phase I was going thru where I wanted to lay on the foor of the bus, but no, I was dizzy enough to want to hurl.

I also have a few memories of feeling a sensation similar to The Hug in my early 20's. So, I'm not at all sure that I developed MS after having mononucleosis in 1996. I'm not sure if my memories are correct for the timeline of when I remember some of this stuff.

I was dx last year at the age of 50. I have 6 lesions in my brain and one on my spine. I have muscle stiffness/spasms in my left leg and need to use a cane most of the time when I go out. I also have constant stiffness (ms hug) in left rib cage and back and occasional burning/tingling in my left arm and on the top of my head. So as you can see the number of lesions is not necessarily related to level of disability/problems.

Thanks so much for your insight. This is just such a strange trip. Now I keep convincing myself that every single weird sensation that I have has to do with MS. I need to quit it.
One other question I have is this - does heat actually cause flare ups, or does it just make old flare ups feel worse? My doc says the former, but all literature that I've read says the latter... I really like being outdoors, and I live in Texas. Not looking forward to trading my mountain bike for a stationary one... :(

Hi, welcome! I am extremely sensitive to heat, but it has never caused a "real" exacerbation, only a worsening of symptoms or what they call a pseudo-exacerbation.

I tried to rake for a few minutes in our surprise 80-degree weather the other day, and I was suddenly weak, wobbly, foggy-brained, etc. It went away after I cooled off. Sometimes it goes away in a few minutes; sometimes it takes a few hours. Sometimes I have that "just got over the flu" feeling for up to a day. Who knows why.

I can date my symptoms back to my teen years as well, but had my first major attack in 1991. I haven't had a MRI since 2003, but at that point I had two large spinal lesions and three small brain ones. The spinal lesions are the one's that cause me the most problems, for sure. Have you had a spinal MRI too?

I've known people who've had 100+ brain lesions, even a 13 yr old boy, but after trying all the DMD's he finally settled on Copaxone and LDN, and has done wonderfully since then. Last check he had NO active lesions.

Erin and Barb have given you some good advice. As far as heat, it can cause psuedo exacerbations and symptoms, but they will let up when you cool down. This is true of stress, over-doing things, and infection as well. However, infection left untreated can put us into a full-blown attack too, so this is not something to leave! If you think you might have an infection, treat it with fever reducers faithfully, until you can get checked out and a rx for antibiotics. Bladder infections are very common.

Welcome to the forum.

Cherie

Wow - thank you both so much!
Yes, I have had a spinal MRI, which came back clean. No lesions on my cord or O bands in my fluid from the LP. Just in my brain... and I always wondered why I was nutty... ;)

Oh, and . . . I don't agree with everything that is said in this link, but it is the best one I've found for comparing efficacy and side-effects on the various DMD's.

Just click on the list on the left to view each:

http://www.themcfox.com/multiple-scl...ectiveness.htm

Cherie

Hi, Rissa.

I was diagnosed at the age of 25 but I have been able to take symptoms back to childhood possible even before my teens but it's hard to know what would have been normal at the time and what could be considered MS.

I have recently had a symptom confirmed as a MS symptom that I can remember having around the age of 12.

You will find quite a few people with MS that after learning and researching abou the disease realize they had symptoms as a kid.

This link is to The Rocky Mountain MS Center here in Colorado. They have a newsletter INFORMS and this one was dedicated to Pediatric MS.

http://www.mscenter.org/images/stori...ormsSpring.pdf

This is a small excerpt from the spring 2007 INFORMS........

Dr. W.: Pediatric MS is actually not
that uncommon. In fact, when large
MS centers look at their patient database,
they realize that up to 10% of
adult MS cases have had their first
symptoms before age 18. However, for
various reasons (lack of care provider
awareness that MS can strike in children,
mild symptoms in a patient too
young to realize these are not normal,
consideration of other more common
diseases…), often the diagnosis is not
made early on, and can be delayed
until adulthood. There are some reasons
to think that there are between
10,000 and 20,000 patients affected by
MS who are under the age of 18 in the
US, but the number still may be

underestimated.

I had a fever from an infection in my mouth (had dental work, got the infection after) earlier this month or at the end of last month.

The fever, I guess, made my right foot really numb. Like the dentist stabbed me in the foot with the needle full of novocaine numb. Went to my neuro, because I thought it was a new symptom. My neuro told me that I needed to learn the difference between pseudo-exacerbation and an actual exacerbation. (I thought I knew this already)

He said because I'd told him I had numbness in my feet once, that this was a pseudo-ex because I'd had numbness in my feet before. I have had numbness in my feet before, but never anything to the extent that I had when I saw him. I couldnt feel my toes. Before, it had always just been a light, tingly numb sensation, but I could still feel stuff. This was a near total numbness.

This was at the end of March, or the beginning of April. Saw the Neuro on the first (un-Happy April Fool's Day for me!) and he said for me to ride it out since he thought it was a pseudo and not a real exacerbation. I'm thinking he was wrong. Because here I am, end of the month, no fever, and my foot has still had some numbness. I can tell it's resolving itself somewhat, but it's taken weeks for it to get to that point. Yesterday it was pretty numb. Today it's better than it's been.

I think if it had been a pseudo, it would have gone away after the fever had resolved.

It's starting to get warm where I live (Nebraska) so I guess I'll know pretty soon if I'm heat sensitive or not. I think I am somewhat, but just not sure how sensitive.

Welcome aboard Rissa :)! I just wanted to let you know that there are few of us that don't have problems from the heat :). I stay out of direct sun but enjoy sitting on my patio even when it's 90 degrees! I don't have any pseudo-exacerbtions from it as far as I can tell. I am definitely more affected by cold weather. Maybe you'll be an odd ball like me :D!!

Welcome to the board. You got questions, we got answers!

I chose Avonex just cause I didn't want to inject myself any more than once a week.

As far as the heat goes, I think it just makes old symptons come back temporarily. Get back in the cool temp and they go away. Check out all the cooling gear that you can buy. There is one of the MS organizations that have a free cooling program. Well it's realy a rental but you get it for life. You get a vest and several other things. I wear my vest when I go places to like the zoo or an amuzement park. If I want to play outside with my grandkids I might wear it or just keep plenty of ice cold water with me. My neuro also told me that taking Tylenal before doing something in the heat helps some people because it keeps down your core temp. I also gave myself a generous Christmas present a couple of years ago and put an automatic starter on my car. So I can turn it on before I get out to it and the AC is already on. Get a written statemnt from your doc that says AC is medically necessary and then give that to your local gas/electric company and they can put you on a priority list if the power goes out.

Good luck with everything!

Hi Rissa -

Welcome to the board! Sorry ya gotta be here, but there's a wealth of info here.

As far as what treatment to go on, well, I'm not gonna be of any help. I don't take anything for MS. I followed the trials very, very closely in the late 80's and early 90's. The results during the trials were not all that impressive (sorry). When beta 1b got approved by the FDA in 1993, we (a group of us with MS) were kinda surprised.

Ok, I guess an explanation is in order... 1b = betaseron. Beta 1a = avonex/rebif. COPII = copaxone. I think Tysabri is a monoclonal antibody. There were ~ 30 drugs in trials in the early 90's. The CRAB's were roughly equally effective. Dr. Ted Yednock's work with monoclonal antibodies seemed to be the most promising. Somebody once told me the TY in Tysabri stands for Ted Yednock. If true, then I guess I'd lean toward this.

I did get scared when my lesion count increased dramatically in 2003. I actually took copaxone for a couple of weeks...

Now the really good news. I was dx'ed with MS at the age of 30, in 1988. No mystery here - I woke up one morning with ON and boom. I had MS. I still live/work/play a relatively normal life. MS is not a problem. Health related issues due to smoking, however, is another story... If ya want to, you might catch a glimpse of me on TV next month on the NASA channel. I'm one of the mission managers for the next shuttle flight (launch 5/31).

Which brings up the heat issue. Yes, I'm in Houston. I have no issues with heat. It bothers me, but it bothers my wife more, and she don't got MS. We were living in Toledo, OH when I got dx'ed. We moved right away to Miami, FL. I had to get as far away from Toledo as I could because a dx back then was career ending (nuclear power plant engineer). So I've lived in Miami and Houston ever since the dx. And I don't like cold weather any more.

Lesions? I had over 30 in 2003. I'm actually seeing a neurologist next week so I may get an MRI - I have a nerve issue which I don't think is related to MS.

I find myself in Austin every April. I work the MS150 Houston-Austin thing as a volunteer every year except this year (I had to get a few aneurysms repaired - smoking related). I actually did a few designs on federal buildings and bus facilities in the Austin area prior to taking a job at NASA (I'm a mechanical/nuclear engineer).

If you're ever in the Houston area and want a behind the scenes tour of the Johnson space center, let me know. I'll even show you where the aliens are...

Tom

Thank you all again. The info that's been provided here faaaar surpasses the info my doc gave me. I think I've made my decision to start on Avonex. Call me vain, but I have a hard time swallowing the "dents" that come with Copaxone treatment. I guess I'll start on Avonex, and if it makes me unbearably sick, I can fall back on Copaxone. I do really want to treat this in a preventative way... the longer that I can live an active life, the better this whole "MS thing" sounds. If I can do anything to prolong that... I'm all for it. I'm also looking into holistic treatment (not to replace conventional treatment, but to supplement it). Maybe accupuncture, or diet. I've heard a lot of good things about an herb called TMG from my grandmother. She had a bunch of spots on her brain MRI a couple of years ago, due to mini-strokes. She'd began taking TMG and doing yoga, and her follow up MRI was clear of the spots. The doc actually used the word "miracle." Not sure what that means for MS spots, but it may not hurt to try... Who knows, maybe I'm grasping at straws here. :rolleyes:
Oh, and if I'm ever in Houston, I'm totally taking you up on the alien tour of the Johnson Space Center. Haha! :D

Rissa!
Rissarissarissa!

One big, warm, tight, hug, handshake and howdy, moose-size official type welcome. This place is amazing!

You've already got some great info from our members. Try not to let it all overwhelm you. Small doses, if you will. There's some info on the web on MS that is really out-of-left-field type stuff and from time to time even 'experts' will contradict each other... and themselves. All I can add is;

You are not alone.:)
You are one of us.:hug:
And we are here to help.:grouphug: