Hi 4boysmom,

My symptoms go back to the late 70’s, but a much of my difficulties were blamed on sinus infections, stress, over-working, etc. Don’t know how those things could cause my legs to buckle, etc. . . . but I adapted my lifestyle to my limitations.

In 1991 I had a Transverse Myelitis attack that affected me for 18 months. They told me then that it was either a virus that got in my central nervous system, or MS. After a botched LP, I was categorized “probable MS”.

I refused a MRI at the time (and for many years after), than promptly went into denial since there was no way to treat MS anyway back in those days.

I had small "flares" over the years to 2003, than I had another TM attack. MS was confirmed, but it took a MRI and another year or two for me to eventually reach "acceptance". That was the only MRI I ever had, and it was deemed not necessary for the dx . . . my doc did it out of morbid curiosity. :cool: I had two LARGE spinal lesions, and only 3 brain one's (without contrast).

TM (spinal lesion) attacks can have the effect of leaving someone bedridden from the get-go 1/3 of the time, moderately disabled 1/3 of the time, and mildly disabled 1/3 of the time. I have had three of these attacks so far, and I am moderately disabled at an EDSS of 4.0 or 4.5. I was one point higher before starting on LDN, and have remained disability “stable” since starting that drug in 2005.

My worst symptom is fatigue, and that is mainly what took me out of the workforce 3 yrs ago. I have other symptoms, like pain, spasticity, bladder, bowel, cognitive difficulties, etc. . . . all of which makes it difficult to be reliable/consistent in a job.

Yes, I smoke and NO, I don’t think it helps the MS!! Plenty of studies suggest that smoking and MS don’t mix . . . but I haven’t been able to quit. :(

I think the best defense (that I’ve incorporated) for managing this disease has been:

- LUCK!!
- Reducing stress!
- Cutting out dairy & beef (in my late teens)
- Avoiding/treating infection immediately!!!
- LUCK!!

My neuro’s (several over the years) all told me that spinal lesions do not seem to respond well to the drugs we have available; CRABs, steroids, etc. I am also extremely sensitive and/or allergic to many meds, so I have never done any of them (including symptom mgmt ones).

So, I have had MS for at least 18 yrs, more likely 32+ yrs. I only count since I got the probable dx though ... since clearly they were right in 1991.

Cherie

Thanks Chemar. I will not debate those aspects with Chris any further on this thread, as I know it ends up just upsetting everyone. I will simply attach the links for Chris (or anyone else) to do their own research on the numbers I've quoted, and hopefully we can leave it at that ...

Thanks! All of that info helps me understand where people are coming from in their arguments. I'm big into bias, part of my job in the school district now with instructional technology.

I don't think we need to teach for memorization, as many teachers still do, unfortunately, because you can find any answer you need through research on the internet, but it is important to understand bias! Thus my need to know your backgrounds.

Cherie, I totally understand why you haven't done meds, and I've read about many with the LDN, so I do think that is a form of treatment. My big problem with knowing if your way of treating MS is really worth it (for me, that is, not for you :D) is your lack of MRIs. For me, since MS doesn't show itself in outward symptoms, I worry about what damage may be happening that will jump out and bite me some day!

I agree with some of your ways of treating the disease - I just can't see myself going without a great steak occasionally :winky:!

Chris, I too have a desk job that allows me to take it easier. I was lucky enough to get switched to a district position from a teaching position 8 months before diagnosis. My boss knows I feel like crap sometimes, and he doesn't push me. That is a big reliever of stress!

Thanks again for your answers!


So I have the yearly MRIs to see how the meds are working on those unseen damaged areas. That has played a role in my med choices.

Disability correlates with lesions when it comes to spinal lesions, but apparently spinal lesions don't seem to respond significantly to our treatment options anyway . . . There's not much we can do about that.

With brain lesions, however, studies show there is FAR less correlation between lesions to disability, and disability is all that really matters to me personally. Our brains can also reroute (spinal cords can't), and having dozens of lesions doesn't translate to disability, and/or vice-versa.

There is a TON of evidence to back (the above) simple statement . . . but that's a whole new conversation (for another day ;)).

My neuro see's no reason for me to have another MRI, because I remain disability stable every time I go in to see her :) (SO FAR!!!). If I started to go downhill, or advance in disability, she may change her mind on that . . . or she may just say "what did you expect this far down the track?" ;)

I may have 400 lesions up there for all I know . . . but for me, the proof is in the pudding. I have had MS for 18 - 32 yrs, and I am still walking, talking, breathing . . . so why would I change what I am doing? I think that is true for anyone who is doing well on their treatment choice; if it ain't broke, don't fix it. :D

Cherie

I'm now extremely curious to see a spinal MRI. I had only my brain MRI'ed and that was enough for my diagnosis. My neuro had mumbled about doing another MRI before he diagnosed me (of the spine etc) but he never mentioned it again.

If I'm not mistaken L'Hermittes is a symptom that's directly related to spinal lesions? Correct me if I'm wrong. But I've had L'Hermittes a couple times, so if that's the case, I definitely have lesions there too.

I wonder what the forecast for brain stem lesions is? :D Some of my 'bigger' symptoms (the trigeminal neuralgia, burning mouth) point to damage in the brain stem.

(Sorry tangent!)

I would be happy to share my spinal MRI with you...I don't want it. :mad:

I don't really know the answer to that question, Laura.

They say the CNS consists of the Brain and Spinal cord, but "they" often don't mention much at all about the brainstem specifically.

I know that the brainstem is the portion of the brain that is continuous with the spinal cord, and it is where all our cranial nerves emerge. The cranial nerves are all the ones that affect our peripheral facial nerves, and CNS optic nerve.:

http://i12.photobucket.com/albums/a2...sbrainstem.jpg

http://i12.photobucket.com/albums/a2...ervesbrain.jpg

http://i12.photobucket.com/albums/a2...esbranches.jpg

The resulting damage that occurs from lesions in our spinal cord (and damage to our spinal cord nerve "roots" that feed our peripheral nervous system) can be severe and permanent. They don’t reroute the same was as our brain does. Parts of the brainstem seem to have similar function (have the roots for the cranial nerves). I am ONLY guessing here, but it would seem logical that damage to THAT root system might be (less encompassing, but) just as long-term as damage to the spinal cord root system . . .

I don't know for sure though.

The "inflammatory" lesions (that they always seem to be looking for in our brain MRI's) seem to have the least impact on our disability. But they have found treatments to make those pretty lights go out up there, so that's better then doing nothing perhaps. Well, the meds do seem to affect (brain) relapse rates too, and most of us would prefer to avoid them (relapses) when possible.

Actually the CRABs and Tysabri may affect brainstem lesions too, but I don't know.

Yes, L'H is apparently due to C-spine lesions. Spinal lesions can be very sneaky to observe on a MRI, so having one that doesn't show lesions won't necessarily rule them out.

Cherie

As per your link:

Do you see where they are referring to “ever exposed”, “in the clinical trial and post-marketing settings”, and “Cumulative total patient exposure”? They are talking about ALL persons who’ve EVER tried Tysabri, including those from the clinical trials.

As per my link (below), as at June/08 the numbers were:

The following paragraph refers to the "cummulative" numbers, just as your link did.

The 3,304 patients are those that were enrolled in TOUCH (in June/08), and had recieved Tysabri for 18+ months. The 6600 number is how many have taken it for that long in total, cumulatively, including all the trials.

Therefore, the 6600 number (which is now 9500, or at least last we heard in Dec), includes the 3000 (or there-abouts) from the trials, just as the "announced" number in June/08 did.

There is additional info on the international participants (at that point in time) in this link:

http://www.neura.net/channels/1.asp?id=942

Chemar has asked that we don’t argue about this any more, and I will respect that. If you wish to debate your understanding of the numbers vs. what I have just provided . . . we can talk about this further by PM (or email, if you don’t have PM rights yet), I am happy to do that. Perhaps we can come to an agreement that way, then report back here ...?

Cherie

Chris, are you still out there?

Obviously either of our sets of numbers up for interpretation, but maybe we can figure this out once and for all if we work together on it. :confused:

Cherie

Still here Cherie.
 

Cherie,

Thanks for checking out my link. Please go back and look at my original point - There were zero patients at one year of Therapy on the slide until the Dec 07 numbers. This couldn't possibly be true if the original clinical trials exposure were included in the numbers. They did start new trials at the same time as the recommercialization.

When you think about it logically, it wouldn't make sense to include the original trial numbers with the post commercialization numbers as the circumstances surrounding treatment in the trials is substantially different from what they are trying to do in the commercialization setting.

Chris

Hi Chris,

I understand your point, but it doesn't explain mine. ;)

Can we talk about this offline, then hopefully come back with an answer?

Cherie

Cherie,

I read through your link and all I can say is that the issue is as clear as mud. My link to Biogen's charts clearly shows that they did not include the prior clinical trials in their safety numbers reported there. With your link it is impossible to tell if the numbers exposed to Tysabri include the prior clinical trials or not.

With it being as clear as mud, it is clearly up for interpretation. I still believe my interpretation is correct as evidenced by my example but this is clearly not enough to sway you. (At the end of the day I live with this risk, literally as I'm taking the drug) We don't have to agree. The only takeaway we both should have from this discussion is that posting PML risk numbers is fraught with potential for error/misinterpretation. Is this fair for someone contemplating using this drug? The label says 1 in 1000 with new wording that the rate in monotherapy appears to be less than this. Let's let the regulators decide what the PML risk is in monotherapy based on the correct patient exposure data in monotherapy.

Chris

My experience with statistics is that they are usually biased. People use statistics that flatter themselves. We saw this all through the last presidential campaign. Each side used what stats best fit their agenda.

It is truly as Mark Twain said, "There are 3 kinds of lies; lies, damn lies and statistics."

What it boils down to is what each person with MS feels comfortable with. I could never be like Cherie, never having MRIs, not taking any DMD. I would find it difficult to look at my husband/children/grandchildren and say I didn't use what was available for me, so now you get to take care of me.

I fully realize that I may end up not being able to care for myself someday anyway, regardless of the treatments I'm using now. But at least, and I mean least, I can say I gave it my best shot with what information/medicine I had available to me at the time.

This is evident with me being on Tysabri, when really, I'm probably a very, very mild case of MS. I figure I want to stay that way. It helps that I have double insurance coverage, make good money, and so that is not an issue. I believe I prepared earlier in life to get to this stage, not knowing then that I'd be in this situation now.

If life hands me PML, so be it. I'm fully prepared to meet whatever challenges lie in front of me. I have faith in Tysabri. Sometimes that is better than statistics!!!

With all due respect, this may be Cherie's decision, but the 2 of us live in Canada. MRIs here are a bit 'different' than in the USA. They are not done frequently in a lot of cases. Heck, I'll be lucky to have another one myself. The waiting lists to have this particular test done are quite extensive.

I've heard the same in other countries as well. Medicine is not the same everywhere. :)

Do you also supplement elsewhere beyond DMD's or Tysabri (as examples) for your disease? If so, what have you found that has worked for you? I'm much like you, I want to ensure that I'm doing the best I can for my disease course in my mind. I'd be interested to hear what other changes you've made. :)

I understand what you are saying about the MRIs. If I was in a different financial situation, I'd probably be more conservative. I was just stating that it would be difficult for me to be that way. Cherie seems to be at peace with her disease management, and I think that is great!! We all have to do what works for us.

I just know my personality, and know I could not be that way.

As far as other meds/treatment and such, I take a multi-vitamin and 2000 of Vitamin D-3 daily, and my bp med that I've been on longer than my MS dx. I walk a couple of miles 4 mornings a week with my neighbors, in better weather up a hill! I still need to lose about 50 lbs., so that is a battle I have always suffered with.

I don't drink alcohol or smoke. I take 1/2 a provigil occasionally when I know I have meetings late in the day. I drink a lot of Dt. Dew to help with fatigue. I go off it occasionally, but I always find myself back with the bad habit.

I go to bed early if my body dictates that I need the rest. I've learned to not let things stress me out, and my religion helps with inner peace and a sense of my belonging in the world, and my mission in life.

I give service to others as much as possible. For example, today I spent an hour at a local nursing home playing the piano. Then later this afternoon I took a meal to an older couple where the wife just had surgery and was in poor shape. I still had time to take a small 15 minute nap, and play games with my son and DIL after having Chinese take-out for dinner to celebrate the new year.

Focusing on others needs is a great way to minimize any discomforts you may be feeling personally.

I laugh and I love. I've given up the need to always be right. This is probably way more than what you asked for. Brevity never has been a strong suit of mine! :eek:

See, we're all so very different.

I gave up soda entirely a year and a half ago. I had some recently only when I was very ill with a throat virus (ginger ale is great when sick!).

For me, bigger than my DMD is my diet. I went low Saturated and Trans fats and cut out red meat entirely. I am so much more aware of what I eat now, where I wasn't before.

I'd stop my DMD before I stopped eating this way. It's almost the Swank diet, but there are some points of Swank I can't observe (I can't have fish/seafood etc due to allergy).

Quitting smoking was a big piece of the puzzle for me as well :) And exercising daily. Positivity, definitely!

I didn't give up smoking. I've never smoked or drank alcohol, part of my religion. We don't drink coffee either, so the Dt. Dew is kind of bad because I do look at it as a cold form of coffee. It would be better if I gave it up entirely.

It is a vice, and one that I'm working on getting completely out of my life.

Now the whole diet thing is something else entirely. I've had struggles with weight my entire life! Low fat, low carb, who knows what really works. I think we'd all benefit by adding more grain and fruit/vegetables, limiting our meat intake, and exercising more.

I'm also one who has yearly physicals for other things, and visits the dentist every 6 months.

I think the biggest help to my health I've given myself is lessening my stress. I quit worrying about what others think/do, and just be the best person I can be. I don't have to be in charge, and I'm willing to let others fail without jumping in to save them. If it is my responsibility, then I'm there! But I don't need other's problems in my life. That includes my children and their families. I'll do whatever I can to help - if they only ask!

I've definitely added more grain, fruits and veggies, and certainly limited my meat intake. Daily exercise. I've never driven a car, so I walk everywhere within distance to do so.

I too have struggled with weight my entire life. I finally found a way of eating that I like that is beneficial in more ways than one. It's easy to cut down on your fats. Eliminating red meat for me wasn't a big deal. I can still have my chicken and turkey!

I've lost a lot of weight and body fat eating this way since July of this year, and exercising. I don't find that I stray from the diet all that often (sometimes you have to allow a little treat to sneak in, but I'm pretty strict with what I eat).

I find I have a lot more energy and confidence at the end of the day. Like you said, eliminating the stress... and managing the diet and feeling good about myself is a part of that, and that also helps being positive :).

Hi Chris,

Since you think you understand your tables better . . . let's work with them then:

I have pulled out the numbers that are relevant for the purposes of this discussion (pg 14):http://library.corporate-ir.net/libr...s%20Slides.pdf

http://i12.photobucket.com/albums/a2.../Twotables.jpg

Do you see where Table 1 and Table 2 have differing cumulative/total patient numbers; Feb (7,500 vs. 18,000), May (12,000 vs. 21,000), Sept (17,000 vs. 26,200) and Dec (21,100 vs. 30,900)?

What would YOU propose the difference in numbers between these two tables (for the same months) represent?

The difference is that the first table shows the number of patients who were on Tysabri as @ Dec/07 (including clinical trials going at that time).

The second table shows the number of patients who’ve ever been exposed to Tysabri as @ Dec/07 (including ALL clinical trials, since the beginning of time).

Do you notice that Table 2 (the one that shows the 30,900 vs. 21,900) is where the "6300 @ 12+ months" number appears?

The reason the 6300 appears in Table 2 is because the number relates to “ever been exposed”, not “on Tysabri”), just like the 30,900 number does (see Dec/07):

http://i12.photobucket.com/albums/a2.../tabletwo2.jpg

You said you didn’t buy that argument because in Table 2, “The safety information lists 0 (zero) patients at 1 year of therapy until Dec 2007” and “There were zero patients at one year of Therapy on the slide until the Dec 07 numbers. This couldn't possibly be true if the original clinical trials exposure were included in the numbers. They did start new trials at the same time as the recommercialization.”

Table 2 does NOT have ZERO’s (through to Dec/07), it has “dashes”. Note the titles directly above (those columns with dashes). The titles indicate the name of the various meetings that were attended (ANN, ENS, etc.) during those particular months.

What those dashes simply mean is that there was NO DATA SUPPLIED during that function/meeting, NOT that the number was zero.

*As far as the the number of “new” trial patients (since the reintroduction), it is written above Table 1 (the “on Tysabri” table), where it says: “Clinical Trials: ~700 patients on therapy in clinical trials.”

Once you understand the information from the tables you’ve supplied, I suspect the numbers supplied in my link won’t look nearly so muddy to you either. If you still don’t get it though, all I can do is hope that anyone else that cares enough about the real stats will take the time to figure it out for themselves.

Cherie

I agree with your comment about stats, 4bm. One plus one still equals two though, no matter how you swap the numbers around. ;)

Everyone has to do what they feel comfortable with for their own personal reasons. You are accountable only to your loved ones, and me to mine. Only time tells if they were good choices . . . and so far I've done well with mine.

Let's talk again in 15 yrs or so though . . . ;)

I've had this disease a LONG time, 4bm, and suspect that am much older then you. I've had a good life, and will have no regrets.

Chances are you will eventually learn to be at peace with this disease too.

Cherie

Let's just leave the stats to the regulators
 

Cherie,

This discussion is clearly not advancing anyone's understanding of the PML risk with Tysabri and risks a re-escalation of board tensions so let's just leave the risk calculations to the regulators. I will definitely respect the boards rules to avoid strained discussions. Given the number of patients at 18 months and two years of therapy, this should happen relatively soon and then we can decide who was correct and was incorrect in seeing through the mud.

-- Is not likely zero but a recognition that the numbers were not material given that the drug was relaunched in July 2006.

Chris

Your picture looks like you are my age or younger. I am 47, soon to be 48 the end of March.

I'm very much at peace with my disease. I think I have it very well under control and managing it the way that fits me. I think you're managing it the way it fits you.

I have a comfortable home (3400 sq. ft. on 3/4 acre) that is paid for. I have a great retirement program with my work that will cover disability at a much higher rate than the government if the time ever comes that I need to use it. I have raised four great men that are either graduated from college, or attending at this time, who gave up 2 years of their life to serve others both here and abroad. I have a wonderful life, and give thanks every day to my Heavenly Father for the blessings I've been given, including MS.

I don't think I need to have 15 years to understand you better. You seem to use numbers to justify your decisions and to react to others. Your last post is to prove once again that you could not be possibly wrong in your opinion.

I understand your bias now, and that is how I'll read anything you ever post. You can do the same with me. My bias is faith based, yours is number based. And maybe biased because of health care in Canada. It is certainly different than America. I hope you never regret your decisions, just as I hope I never regret my own. We're just two people dealing with a disease.:hug:

And as far as the one plus one equals two, the problem with that is that four plus negative two also equals two, along with six plus 10 minus fourteen equals two, and an infinite other examples.

You can do whatever calculations you want to get the answer you desire, thus the problem with statistics.

(Don't tell anyone that I use data all the time to prove that teachers aren't doing what they're supposed to be doing with regards to software when their principals ask for the info - just a small bit of hypocracy on my part! :D)

YIKES, you are old (like me!). I am older then you, but not by much . . . guess I just look younger than I am (in pictures anyway :D ;) ).

Yes, we are both managing the disease the way that suits us as individuals. It really doesn’t matter to me if you think you couldn’t face your family having made the same choices, or can’t understand (or disagree with) approaching things the way that I have. :cool:

I haven’t closed the door to any options, including Tysabri. What you choose to do (now or later) is of NO consequence to me, and I have not (and do not) make judgment about other’s choices . . . to each their own.

No, you don’t have to have MS for 15 yrs to understand me better, and that is not what I meant. What I meant was that in 15 yrs, maybe I will have lived long enough to see the errors of my ways . . . but after about 45 yrs with the disease (at that point), I honestly don’t think I will have any regrets. :)

My bias is based on experience, research AND faith. Our healthcare systems may play into it our points of view to some degree as well . . . although if I believed that there was any point in bucking the system, I could and would.

Not everyone thinks the same as you in the USA (or me in Canada) but we are all entitled to voice our opinions. BTW, we are both in America (north). ;)

I didn’t say "other" numbers can’t add up to two, just that one plus one always equals two. When the variables are simple, the math isn’t complicated either.

I don’t “want” any specific numbers, I have presented what is documented in both Chris and my links. As I said, I sincerely hope the PML stats reduce over time, but they are what they are for now.

Have you even reviewed those links, 4bm, and do you have any specific objection to what I've presented? It’s easy to sit back and say “you are wrong” or “you don’t know” . . . but please show me where I have misinterpreted, if you think I have. :confused:

Cherie

I'll just contact Biogen to see what the numbers are intended to include
 

Rather than continue the interpretation game, I'll just contact Biogen to see what the numbers include. Suggest you do the same Cherie and then we can meet back here to relay the result.

Chris

That is a GREAT idea, Chris. :)

When you find out what your tables indicate, would you please also ask the person's name? If the answer seems to be the way you understand things, I will follow up with him/her specifically on what the (monthly) differences between the two tables indicate . . . because the numbers would obviously require clarification.

Cherie

Yeah, I've looked at the links, but the numbers and delving into them deeply are not what interests me. I don't think either of you are wrong. I think you're both looking at them from your particular viewpoint. That was all I was trying to say.

I could care less which of you are correct in your arguments.

But then that is because of a particularly strong bias I'm experiencing at work right now with a debate coach at one of our high schools! I totally dislike debate, and debaters. :mad: They make me grouchy! It has nothing to do with MS, this forum, just my work! I've had to search the internet for over a month now rebutting her arguments, where she has just presented the information that was particular to her need and her side of the story.

In fact some of what we used against her was research she presented for her side!

So I apologize if my frustration with all of that spilled onto this forum. I guess I saw that happening here, and it is futile. People stick to their point of view regardless of what is presented to them.

I'm glad you guys have somewhat worked out a compromise. All I can say is that I'm on Tysabri, and I'm grateful to those researchers working hard to find something to make my life with this disease better!

One thing we can all agree on in this thread,

A cure in 2009! :grouphug:

As someone who loves statistics and has been accused of being able to argue the paint off of a barn.... (LOL), I daresay (and I'm sure someone will correct me if I'm outta line) seriously.....love y'all but I'm not waiting with bated breath for any kind of 'data resolution' or 'final consensus' here. Maybe I'm alone in that? Who knows...
But such finely sliced and diced analysis is not going to change peoples' behaviors or perceptions of Tysabri and the hope it provides to many.

If I deserve to be thumped, go ahead, just thought I (personally) needed to express this.

:OuttaHere:

We won't thump you Becca! :hug: But seriously, I agree with you 100%. None of these discussions has ever changed my mind about any drug. I do my own research and listen to my doctor. I'll take Ty until I come to the conclusion that it either isn't working anymore, or they have something better (like an effective pill). :)

There are plenty of subjects that don’t interest me either. I normally just don’t follow those threads. :cool:

Nailing these numbers is not about “the debate” over who is right or wrong. Frankly, even I couldn’t care less about that. This discussion is about giving people the information they need to make fully informed decisions . . . no matter WHAT the number is.

When weighing up this drug, I'm betting almost everyone at least considered the 1:1000 odds (over a mean of 18 months) of getting PML. That might not be considered too big of a risk for some people (and/or their doctors), yet for others it definitely IS enough to deter them.

Those odds might increase to 1:500 or 1:20, and I would suggest that might make a difference to many people, even some that are currently on it. Personally, I would not choose Tysabri at 1:1000 (or slightly more), but if the odds dropped considerably, to say one in 6000, 35,000 or 50,000, that very well could matter to my (and likely some others’) decision.

There are people on the net that are suggesting that “there are only 4 cases of PML in 35-odd thousand people now (or "1:6000", so no need to worry)” and/or some of the PML cases “don’t count, because .... blah, blah, blah”. That is misleading, IMHO, and may give people a false sense of security.

Considering the interest in this information (by patients, shareholders, etc.), I would think Biogen would be updating us regularly with exactly how many people have taken this drug for longer than 18 months, and the number of confirmed (not to mention unconfirmed) cases of PML. But, I suppose as long as everyone “thinks” they know, and those assumptions look good for the company, they have no motivation or obligation to clarify any misunderstanding there may be.

I am interested in clarifying this once and for all, so we have a starting place to “build on” for future announcements on numbers . . . But for those who “don’t care”, please feel free not to follow the results of our discussions with Biogen. ;)

Cherie

I find that statement very interesting coming from someone who smokes, whose risk of lung cancer has got to be a lot higher, and also affects family members living with them.

Why the concern over PML and Tysabri?

I see two different situations here. If a person chooses to smoke, he/she accepts the risks involved with that.

And "why the concern over PML and Tysabri?" ....hmmm, if one has to ask that question, well...

Harry

I don't quite understand what you are saying Harry. I was remarking that lady express 44 would not take the risk of tysabri with odds of 1:1000, yet she continues to smoke.

Odds of lung cancer are more like the 1:500, and 1:20 with smoking. One report I read recently stated 1 in 4 smokers would develop lung cancer, and most died within 18 months of developing the disease. A lot worse prognosis than PML with tysabri. But with all her research I'm sure she knows that already.

She wants everyone to have the right figures to base their decisions on whether or not to take tysabri. I just wonder why it is so important to her for us on tysabri, and those future users to know whether we're dealing with 1:1000 or some other figures. Yes, there is a risk. I answer those questions every infusion I get. Yes, I feel crappy for 1/2 hour after the infusion, having chills and headaches that aren't a lot of fun. The rest of the month I'm super!

Any med we take has an inherent risk. And it is a choice we make, just as smoking is a choice we make. I probably lived for many many years not knowing I had MS. I know for sure I went for four years with MS before being dx'd because it is a symptom that remains with me.

I felt and did much better on no medicine. It is a choice now to be on tysabri to keep from getting disabled 20 years down the road. I plan on living a long, long time.

Tobacco, drugs, alcohol, food, etc. are very strong addictions for some people, and in my case, smoking was one I picked up when I was 12 yrs old. I have tried to quit (as I mentioned earlier in this thread, when you asked about my bad habit), but I have been unable to do it.

Tysabri is not an addiction, and I am no longer 12 yrs old.

I don’t claim to be perfect, but just because I haven’t been able to manage one bad habit, doesn’t mean I am not entitled to make adult decisions about whether I want to take on additional risk, does it?

I am not making judgment on your personal choices, or asked you about your imperfections, 4bm. I don’t care what YOU do.

Cherie

Don't get me wrong, Cherie. this subject does interest me. :) I follow the Tysabri story pretty closely. I have friends on this drug, conversations with my neuro and ms specialist about this drug, and might have to consider taking this drug in the future (like anyone else with MS, I realize it behooves me to keep options open). I'll continue to take an interest in Tysabri threads.

I know you're a numbers and stats girl, I can appreciate that - we're similar in that respect, anyway. Whether you continue this discussion here is totally up to you of course; I have no say about that and it's a-okay with me.

I just wanted you to know that some of us are not waiting to hear the verdict you and whomever else comes to, because we've already made our well and fully informed decisions in partnership with our respective neurologists; which ultimately, is as it should be.

For all the rest, I hope they stay tuned if that's their desire (and that they follow up with their neurologists after the fact).

You do make judgments.

You like to correct everyone and show how your research is better.

You didn't answer my question.

And before you say I didn't bring up your bad habits, I know full well that my being overweight is a problem with my MS. I'm trying to lose the weight, I get up and walk every morning to keep my body moving, etc. Food is a necessity that can also become an addiction. But I blame myself for that addiction, just as smokers have to blame themselves for their addiction. It is a choice for both of us.

sorry but it seems this thread just continues to go downhill and so is now closed

If relevant data is found on this topic, please start a new thread for that and take the personal disagreements to PM

thanks