Cherie, I have some good info on the accrual of disability that proceeds independently of the lesions seen on MRI - and especially the difference in the process of CNS damage that occurs in SPMS and PPMS. I referred to it above when I was talking about the direct degeneration of axons. That is where the newer info in MS is focusing and where the analysis of Inflammation/myelin/lesions/disability breaks down. It answers a lot of the points you brought up.

It also shows that I am not good at keeping my word. I have to break form the 'puter now. I'm in a relapse (or an exasperation as we say at my house) and I can no longer contorl my right hand.

President and Founder of the support group for people who talk too much:

ON-AND-ON ANON

Quix

How cool is that?? Thank you so much for coming over to the forum (and Snoopy for following up). That is very generous of you!

This isn't "mbsews" (Mary), is it . . . Pediatrician with MS, etc.?

Anyway, I am going to think through what you have said, and I will be back with my questions.

I so appreciate you offering to answer questions for us!

Cherie

Snoopy thank you for the information - I found it very interesting!

quix.

Please don't disappear, at least not permanently

As you can see we are interested.

I am sorry your having an exacerbation they really stink. If you hang around long enough you will find us to be quite a talkative bunch....well, I'm not but everyone else is

I agree - it's very generous of you, Quix.

Cherie, I had nothing to do with Quix being here. I am assuming someone who is a member here or visits saw the thread and let Quix know.

I'm with the rest of the gang, Quix. Welcome & please don't disappear.

Your insight and unique perspective are quite helpful and even reassuring.

In my own case, I have wretched spasticity in my legs, yet no spinal lesions have ever showed up. It is getting progressively worse and I'm up for botox injections.

Whether it's true or not, I take a perverse comfort in believing that my problems with my legs may be due to strategically placed silent lesions in my spine.

And in addition to providing a service to us, you seem like just a good person to join in our community!

I hope you'll stay!

Again, thank you for making something that is very hard to explain, so simple to understand.

In my first posting of this thread, I was really excited to read what you had written because we’ve been talking about a lot of this on the forum lately, and so much of what you said is what I have understood to be as well. I was actually kinda’ sad when I realized this was “just” a patient’s account, even if it did seem like a MS/medically-educated one.

Either way, I think we’ve all run into lots of doctors, even neuro’s, that have different understandings of the disease, so I posted again on this thread to forewarn people that this information was just “another” interpretation (educated or not) that was important for consideration.

I haven’t really spent a lot of time trying to understand the “scientific” aspects of this disease, to be honest . . . but I still have lots of questions. I am particularly perplexed by the lack of lesion evidence in a MRI, especially when it is often very obvious that the disease is wreaking havoc in our bodies. I appreciate there are no concrete answers out there as yet, but I hope you will humor me with some non-medically-trained brain-storming on the theories.

I am always interested in understanding all that I can about this disease, and hope that I don’t wear you out, especially when you are not feeling well. Please feel free to abbreviate your answers, and/or break up your posts if this is your preference. That’s what I'm going to do, which will hopefully make me seem not so demanding , and so that they are not so daunting to answer.



I think you are right. Many people simply regard lesions as the white spots (or black holes) that ‘sometimes’ show up on our MRI’s. In early MS, this is often our only objective evidence of the disease, and there evidence is interpreted as a visual measurement of disease “activity”. Our neuro’s often perpetuate this by identifying when there are more (or less) lesions, hence more (or less) “disease activity”. Relapses are often tied to this visible inflammatory activity as well, although there is plenty of evidence that we can be in a relapse without MRI enhancing lesions apparent, and vice-versa.

I appreciate that many people will unfortunately go without a dx for several years due to a lack of this MRI evidence too . . . but unless we are very well educated on symptoms and testing options, and we have access to the best MRI technology, etc., chances are we are not going to get past some arrogant neurologist who CURRENTLY has his mind made up that we are just neurotic. In fact, standing our ground may only “label” us . . . so I think the best advice you gave, in this regard, is to be re-evaluated, especially if additional & difficult symptoms occur in the future.

Other helpful tips may include, getting a second opinion ... maintaining a diary with dates of symptoms (start/finish) ... but MOSTLY for patients to appreciate that TIME will usually unveil the truth anyway.

http://www.naturalnews.com/019977.html

I'll be back . . . Cherie

I'm baaaack . . .



I recall reading a few years ago that a large % of our lesions, especially in certain areas of the brain, go undetected. MS also used to be thought of as mostly a WM disease, but there is evidence of it being prevalent in the GM as well.

http://www.ajnr.org/cgi/content/abstract/26/3/572

If . . . in your article, you are referring to a combination of the various disease process factors (eg. Oligondendrocytes, axonal loss, demyelination, etc....) as “lesions” . . . I suppose much of the disease process might not necessarily be visible in our MRIs.

Could the death of oligondendrocytes (from whatever cause) be the “driver” of inflammation, and/or could that possibly be the reason that lesions don’t show up for some amount of time after the damage is done? If axonal damage is an early feature of this disease, even in RRMS, would this process necessarily be visible in a MRI?

Since so much of our disease process is hidden, and we can have relapses without showing active lesions/no relapses while having active lesions . . . I wonder why bother even having MRI’s once we are dx?

If only a few of our “unhidden” lesions show anyway . . . wouldn’t disability (indicating what’s clearly going on behind the MRI scene) be a much stronger indicator of our disease progression?

http://registration.akm.ch/einsicht....NMASKEN_ID=900

Are we even SURE yet, whether relapses are such a bad thing? Could the inflammatory process just be a consequence, and trying to control it like putting a glob of gum in a leaky boat?

http://www.ncbi.nlm.nih.gov/pubmed/16918358

I'll be back . . . Cherie

I would appreciate you forwarding this to me by PM, or if you could direct me to the link.

Thanks, Cherie