I've been working on understanding which symptoms point definitely to the spinal cord and which don't. I am not an expert here. This is what I understand about spasticity.

The majority of the spasticity you see fairly early (first decades) in MS is from the spinal cord. Spinal-caused spasticity is milder and more limited in space (fewer limbs or areas of the body) than that caused by the brain. I realize that "mild" here is very relative. A "little" can play havoc with your entire life. But, spasticity from the spinal cord still allows you to get around, it just makes it harder and harder. Spasticity from the brain happens when a huge amount of brain ahs been injured and tends to be severely incapacitating. (Picture the frequent global injury from Cerebral Palsy and how it often prevents any ambulation at all!)

I agree that you may have a lot of spinal damage that has not shown up on MRI. AS I said in my article (one of them) the spine is notoriously (but not notoriously enough!) hard to image. The 1.5 does a poor job. The difficulty is in the amount of other tissue that has to be penetrated and in the amount of motion that the MRI has to deal with. It isn't that hard to hold your head still. But, even if you don't have any voluntary movements during an spinal MRI, there is an enormous amount of movement in adjacent areas. This motion comes from breathing (it is best if you continue breathing during your MRIs), the beating of the heart (same with the heart), the pulsing of the aorta, the peristalsis of the stomach. All motion introduces error into the image and the computer must subtract this error/motion. In the calculations needed to subtract the motion artifact, information is lost and the MRI image suffers loss of information.

My neuro (whose knowledge and intelligence I thoroughly admire - not true of all neuro's) won't even look at 1.5T spine MRIs, and after my experience I see why.

Late in MS when there is a large amount of brain atrophy you can see the diffuse spasticity involving all limbs and the trunk.

This is the gist that I have understood. And it makes sense to my medical mind.

Quix

Cherie, you are right. When anyone is discussing MS lesions, they have to establish from the beginning whether they are talking about Lesions visible on MRI or lesions which indicate damage to the nerves of the central nervous system. These are two different animals.

MRI lesions become the enemy of the Undiagnosed, when they encounter dismissive, arrogant and rigid-minded neurologists whom I call "Lesion-Counters". Every lesion is counted and measured and no matter what else is occurring in the work-up, if the pre-requisite number are not seen (usually 9, though this is often a wrong goal), then the person does not have MS. Period. I disagree with you that the difficulty is "getting past" these doctors. Certainly you will not go through them. And you will not convince them they are wrong. But, my advice is to go around them. And because arrogance is so prevalent in the field, sometimes one must go to many more. 2nd, 3rd, 4th opinions. So then it becomes important to research who listens, who takes on the "hard" cases and who the other patients respect. That's another topic.

In my usual definition of lesion I am referring to any defect in the nerve structure that causes dysfunction in the body, or that ultimately will cause problems. Thus, the +Babinski test (or the optic disc pallor, or nystagmus) is a lesion seen on exam. The numb hand is a lesion. So is the fatigue and heat-intolerance. I said before that whether they appear on MRI is irrelevant. They are still lesions - something wrong with the CNS. For the purposes of diagnosis, it is certainly nice if some of them at least, appear on the MRI.

When a person has such symptoms and they are ignored (or worse, explained away as neurosis) it is time to ditch that doctor and land running. Yes, time will tell, but while we are waiting irreversible damage can be accruing.

So, even if one were to stick with such a rigid-thinking neuro, your next point comes up. You have an exacerbation and the neuro doesn't see new lesions or enhancing old ones. You will again likely come up against, "your disease isn't active (what !!!! MS is never inactive!) so this therapy is doing fine."

That's why you search until you find a neuro that isn't lazy and doesn't disdain all patients and isn't married to thinking that MS is an MRI disease.

Knowing the the 7T picks up more lesions by about 40% than the 3T, and the 3T picks up maybe 25% more than the 1.5T machines; Why would we think that current MRIs (usually 1.5T or less) pick up everything? Yes, most of our symptoms are from invisible lesions (this doesn't mean they are not there. They are just NOT VISIBLE within the resolution of the machine). I believe that the patient or the neuro that tries to "map" symptoms to lesions is wasting thier time! It is folly! It is also beguilingly attractive to try to do it. I had a full year of neuro-anatomy in med-school. And I can't begin to do it.

If you want to try to "teach" the neuro some insight you can always point out that in the McDonald Criteria they speak of "clinical lesions." These are lesions that are seen on exam by the examiner. Hyperreflexia is a clinical lesion indicating a lesion in the spinal cord. Anyone with a little neuro knowledge knows that lesion exists because of the change in the behavior of the tendon reflexes. Again, not seeing it on MRI doe not negate it's existence. If your relapse involves a new physical finding on neuro exam, you have a new lesion. Period! The best in the field of MS know this. They wrote it into the Criteria for Diagnosis, but it is still true after diagnosis.

That is why in the right circumstances, the diagnosis of MS can be made on the basis of the patients history and phsyical exam alone. This is explicitly stated in both the original McDonald Criteria and the Revised Criteria of 2005. I will admit that in this country it would be rare for no MRI to be ordered, but the very good and confident MS Specialist can make the diagnosis even with a normal MRI. I know people who have had this done, and in whom the visible MRI lesions appeared after diagnosis.

So, to recap, we all need to know, when we speak of lesions, whether we are talking about those bright things on the MRIs or whether we are talking about the dings in the nerves that are causing our symptoms and difficulties. The disease is defined by the latter of those two.

Quix

P.S. Would someone tell me how to write a reply to a specific prior post and use quotes from that person to respond to? Do all new posts go at the end of the queue or can you wedge one in where it is right under the one you want to address? I am a technotard.

I'm not all that computer literate Quixotic.....everything I know, I've taught myself....but I'll try!

Go to the particular post that you're interested in and hit reply. When you do that, everything the person who you have hit on said, will come up as a quote.

What I do then is delete all the words that I don't want from that post, and just leave the ones I want to talk about. Leave the "Quote" brackets at the beginning and the end though. I then get the things I want to talk about in a short rectangle, and go from there.

I'm not sure if I explained myself very well, but if you want to test it out I'm happy for you to try quoting something I've just said, and see if it works for you.

There's also a multi quote option, but I haven't quite mastered that myself.

Other than that, I'll leave it to the experts.

Not "Reply", but click on the button that's inside the message box on the right side that says "Quote"

If you click on the "Reply" under the message box on the left side of the page, you'll just get the generic reply without quotes.

And, to answer Quix's question about where the messages go, they all go to the end of the queue, in the order in which they were written.

I really liked the explanation that Quix gave about the lesions. So, when I had a new case of optic neuritis in february, that was a new bad "spot" somewhere on the optic nerve...and when my right foot went numb in March, then that meant that something bad was probably making itself known on my spine somewhere. (I know I had lesions at C4 and T12 in 2006)

When I had my first MRI of my brain in 2006 when I had optic neuritis, nothing ever showed up on the optic nerve, so, even tho they couldnt see anything, the fact that I had all the symptoms of optic neuritis means that there was something on the nerve, the MRI just wasnt able to see anything there.

I remember the PA at my regular doctor's office calling me up, telling me they didnt find anything on the MRI...too bad she'd only read the first page and hadnt made it all the way to the third page where it said that I had two white dots on my brain (but were not typical of MS and werent in a place that was typical of MS too) I fired the PA, and the doctors at the office now insist that anyone calling a patient has to read everything and not just the Impression on the report.

For about a half hour, I was thinking that there was nothing wrong with me, and then the opthalmologist called me up and said they did find something. He actually took the time to read all three pages of the report.

I think I understand lesions a little better now...that might help me when I go see my neuro this week.

I still had to sit around until the next symptom showed up...which is when the lesions on the spine showed up, waving at the radiologist interpreting the pictures saying "look at me!"

Erin - Bingo! on the concept of lesions as I was explaining it. That's waht I was trying to say and believe myself - with a great deal of support from the literature.

Quix

Thank you for the book reference, Quix.

I love your description of lesions too, and I really wish our neuro’s were that open-minded about acknowledging the truth with MS. And, wouldn’t a “team” of specialists somewhere, who have the knackers to dx the really difficult cases, be a wonderful resource!? I hope that happens one day!

It is often in retrospect that we come to realize that we’ve had some symptoms that implicated MS for years, but I can’t blame doctors (or patients) for not recognizing them as potentially MS-related . . . at least until the symptoms become difficult or it is obvious there is something wrong within our CNS.

Medicine is far from a perfect science, and many (even simpler) diseases go undx for too long. Unless it is BLATANTLY obvious that it is MS, (like if a person becomes quickly paralyzed), and the MRI confirms any suspicions, a lot depends on:

- how we present & describe our symptoms
- recognition of what is important to tell the doctors
- whether the pieces of the puzzle are fitting together
- whether our doctors are experienced or astute enough to recognize our (sometimes obscure and seemingly unrelated) medical complaints
- our relationship with our doctors
- whether we are dealing with other medical issues, especially such things as depression, bi-polar, etc.
- if we are on meds for other conditions
- our doctors personal biases; like the need early treatment, etc.
- technology contraints (MRIs especially)
- insurance company constraints
- our financial constraints
- our time constraints
- MOST IMPORTANTLY, IMHO . . . stress and frustration considerations; what lengths are we willing and able to go through to get a dx?

From what I've read on the forums, the majority of us get a reasonably quick dx, at least once we present with very MS-specific symptoms (thank goodness for MRI’s, when that happens!). But for the rest of us, it can be daunting to try to take on the medical system, especially since many of us don’t have the confidence, unlimited resources, and medical knowledge to do battle with as many neurologists as it takes.

I also think it comes down to our character, expectations, and ultimately whether it is worth the stress we have to subject ourselves to, at least under the current medical system. There are lots of things that aren’t “right” or “perfect” in this world, but taking them on is not always in our best interests, stress-wise.

For instance, I saw my sister do battle with the family law legal system for close to 20 yrs, and I don’t know how many times I suggested, “let it go!”. After every fight, that took a HUGE amount of time and energy, she thought she was closer to resolution . . . only to be smacked in the face again when the cheques didn’t come. I understand she needed the money, and getting it was extremely important to her during those years, but at some point it became abundantly clear that the odds of her finding resolution were too obscure for the personal fight. The time, anger, stress, frustration, disappointment, etc. was just not worth it, IMHO.

In the end, after 25 yrs, the courts sent her a cheque for most of 19 yrs of child support. Nothing she had done expedited that process, all that trouble over the years was for naught ... and if she had JUST waited, the same thing would have happened.

I definitely learned from her experience, and in my child support situation (which is similar), I have opted to pass the stress of that onto the right authorities to wrangle with. I don’t expect child support, I don’t go back to the courts, I don’t chase him around. Then . . . every once in a blue moon I get a cheque for $X-thousand dollars, I am happy camper, and there is NO stress involved.

With the current drug options we have, that MIGHT help the minority of patients in any significant way, I don’t think getting a dx is as important as avoiding stress. Stress and frustration, to the level that I've seen many limbolanders go through to get the dx (and currently most don’t get the dx anyway . . . at least until there is objective evidence!) is very, very BAD for MS. Frankly, I suspect the stress is much WORSE for the disease then going without treatment for a few years, ie. probably a 100% of us would attest to stress as causing us considerable grief if we have this disease (w or w/o a dx), yet a much smaller % of people get any long-term relief (from disability) as a result of our current drug options.

To each, their own. It’s just my opinion, but I stick by it.

Cherie

And a fine opinion it is!

Some people are more stressed by not acting on their own behalf or by believing that someone will act for them, keep their case alive, or come to their senses and do what's right.

As a physician I know that if a case seems closed it is all too simple to accept that and move on to the other patients that are clamoring for my attention.

I was far more stressed not knowing why my body was failing me than by the effort it took to find my answers.

That's why we have forums. When everybody believes/knows the same thing, it's a very boring discussion.

Quix

I LOVE IT!!!!!!! Brilliant!!

If you're president and founder, I'm definitely one of the most well-qualified members!

Thanks for all the info. (Now I'm going to read the rest of this thread. Thanks to, umm, whoever on "the other forum" alerted us to this thread, darned if I can remember now!)

Nancy T.

Cherie, this is VERY WELL SAID. It is SO TRUE. There are so many components to who gets diagnosed, when, and how.

And your point that for some people, the stress--the incredible mental, psychological strain of trying to figure out what's wrong with you given all the constraints you mentioned above--outweighs the value of getting a diagnosis--which might never be a firm one anyway.

If your symptoms and MRI don't scream MS, you're not going to have it easy diagnostically. For people like me who have relatively mild symptoms, it seems better to just let it all go than subject oneself to the repeated dismissals and contradictions--which a few years ago caused me real depression for the first time in my life, which I couldn't even talk about. Worst years of my life, bar none.

I haven't seen a neurologist, nor talked with any doctor about "all my symptoms," in five years--and I've never been happier!

(Although I'm really starting to worry about my ever more wimpy legs: is it a disease, or is it just the combination of fat and fifty? I'll let you know after I've lost 50 lbs!

On the topic of invisible lesions--I know personally that they're for real! I have Lhermitte's, yet two neck MRIs did not show any lesions. (Although the second one showed bone spurs.) The second machine was a 1.5T, the first one I have no idea.

Great thread--I enjoyed reading especially Quixotic's and Cherie's posts. Great to have such well-informed and smart folks here who are so generous with their time and knowledge (among many others, of course).

Thanks all, and sorry to resurrect an old thread--obviously I'm not reading all the threads here, I'm sorry to say.

Nancy T.

I am going to resurrect this thread again! This was amazing and enlightening to me. This really struck a nerve with me because of my particular journey.

I don't think I have ever shared my whole story on this site before. Many on here know my situation because they have known me for the last 4 years only MSW. So, I have decided to share this here because the invisible lesions and particularly the fact that neuro signs actually can represent lesions piqued my interest.

A previous MS Specialist did actually tell me that based on my neuro exam, he felt that I have sub-MRI level spinal lesions. However, until they are actually visible on MRI, they don't count toward a dx. See how this whole process can be so frustrating?

I have been through the ringer with diagnostics and have come up with much less than a definitive dx. Quixotic1's information and story make me ALMOST willing to push forward again.

I have been having problems for about 6 years. First attack of sx was a few months after the birth of my second child. It was pretty short lived and the basic diagnostics came up negative (no MRI - just bloodwork and a CT scan) so when the sx went away, I moved on and never questioned it.

Second incident was in 2004 and it has still never completely resolved. I have seen 4 neuros, all of whom agree that I have an abnormal neuro exam (+Rhomberg, clonus, hyperreflexia, torsional nystagmus, ataxic gait, etc.) and most agree that MS is the most likely suspect but that my MRI is abnormal but not typical for MS. One of the four (from a world famous MS clinic in Ohio) completely ruled out MS despite the abnormal neuro exam and abnormal MRI and told me to seek therapy to deal with a condition which he said will probably never be able to be dx'd.

That neuro in Ohio really destroyed my self confidence. He basically down played all of my sx and signs and told me I was too worried about these problems and to suck it up and deal with it - essentially move on with my life becasue there were no answers for me. He actually told me to take my sx meds, get a good therapist and forget about this.

My present MS Specialist calls this atypical MS or sometimes CNS Demyelinating Disease, but will not prescribe typical MS disease modifying drugs. I have about a dozen lesions, but none are periventricular. Mine are subcortical, some are ovoid, but some are more round. So, that is the sticking point with me because the EP's were normal and the LP was normal.

I can't complain too much about my treatment. He had me on pulsed IV steroids for about 2 years to help keep me stable, he rx's whatever meds I need for sx management. I am taking Provigil and I am on 80 mg of Baclofen to attempt to keep the spasticity at bay. However, for the longest time I have felt that we are far too hung up on the MRI. I have only had brain MRI's for the last 4 years. The last time my c-spine was imaged was in June of 2004.

He made a comment at one appt about watching my brain MRI for changes and if / when there is a change then he will pursue repeating some of the other tests to see if we got an early false negative on some of them. I have moments when I am sure eventually things will change (i.e. get worse) and then other moments where I believe that neuro in Ohio and think that there will never be an answer for me.

It is so hard for us lay people to figure out how hard to push for answers.