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. 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 ) 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 !

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.

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? 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.

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.:







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.

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