Once someone already has the dx, it is my understanding that the doctors often “assume” spinal lesion activity, IF we present with certain specific symptoms.

For instance, my neuro/doctor wait a certain period, and depending on my presenting symptoms, they seem reasonably confident to estimate the spinal lesion location. Is this a common occurrence, or is it because of the severity and extent of my symptoms that they are able to do this? (I do have confirmed large lesions in my C and T spine, and most often experience severe attacks from them . . .)

It is true that our description of symptoms can be tell-tale, especially when it comes to spinal lesions, because of patterns that would imply this activity? And, that how we “present” may help to implicate (or not implicate) the probability of MS activity in the spine . . . whether our MRI’s confirm it or not?

BTW . . . do you happen to know if people with PPMS tend to have more trouble from spinal lesions? Could an initial spinal lesion attack, that is severe w/poor recovery (combined with other definitive dx criteria), cause a person to be classified as PPMS from the get go?

Is Transverse Myelitis a “symptom” (for lack of a better word) of MS, for some people (who ultimately dx with MS)? . . . please see following thread:

http://neurotalk.psychcentral.com/sh...spinal+lesions

Cherie

BTW, not sure if everyone noticed the explanation of T1/T2 lesions on QUIX’s site, but it is also very good:

http://www.medhelp.org/health_pages/...show/23?cid=36

We got into the discussion about T1/T2 lesions recently on the following threads and I don’t think we were too far off the mark in our understanding:

http://neurotalk.psychcentral.com/sh...ghlight=slices

http://neurotalk.psychcentral.com/sh...ght=T1+lesions

Cherie

PS . . . that's it for now . My daughter is in a ball tournament all weekend, but I wanted to get these questions out in case Quix has time to respond to some of them over the weekend.

THANKS QUIX!!!!!!!!!!!

Cherie,

I have to respectfully disagree with the quoted point.

As you know "TIME" can often be our worst enemy when seeking a dx. While patients may be fortunate enough that time does not lead to progression of the disease and possible disability, that is not the case for others. Early intervention with one of the ABCs is the protocol even for "probable" MS and the prognosis for slowing and even possibly halting the disease process is good with early intervention.

I a crusader for the second, third, and even fourth opinion for a potential MS patient. I am also a tremendous advocate for seeking out an MS specialist as opposed to a neurologist.

I had "unusual" symptoms from my teen years forward which came and went. Other than my migraines, none ever had a concrete diagnosis, and diagnostic findings came up empty, with the exception of some minor abnormalities in an EMG when I was a teenager. It was not until the eve of my 40th birthday that it became apparent that I was suffering from something much more than "unexplained symptoms." I landed in the hospital with a loss of sensation and control from the waist down. That was the first mention of MS.

Unfortunately, my lesions were not "typical" for MS, and my LP did not show O-bands--just an elevated protein level. Although the symptoms that caused me to be hospitalized subsided, I spent the next five years in total frustration, being bounced from endocrinologists, to infectious disease specialists, to pulmonary specialists in an effort by a truly concerned internist. The neuro who evaluted me three times nearly laughed me out of his office. My internist was convinced that I had MS, but could get no external validation of his opinion. That was when I gave up on doctors and decided to just gut it out.

Gutting it out soon proved to be futile, as I found myself so exhausted on my drive home from work that I routinely considered stopping and asking my husband to pick me up. The symptoms did not subside. My performance at work was slipping and I was absolutely useless to my family. That's when I found a message board where, through the support of many people who are now members here, I obtained the guidance and support to start exploring the possible meaning of my symptoms and test results.

At that point, the first neuro I went to refused to dx MS even after a bout of optic neuritis, neuropsych tests suggestive of disease activity consistent with MS, and an LP that again showed no O-bands, but an elevated protein level and an abnormal iGG index. After bonding with one of the board members, she and I met twice. The first to discuss my situation and the second for her to look at my records (my situation as I had related it sounded very similar to hers when she was dx'ed). It was at that second meeting that she convinced me to see her MS neuro. She actually went with me and, after a more thorough neuro exam than I had ever been given, the doctor's exact words were, "There's no doubt that you have MS."

By that time I was disabled by SSDI standards. In the process of preparing for the definitive neuro's visit, I gathered all of my medical records and learned that, in addition to the test results I've already mentioned, the MRIs done over those five years showed additional lesion activity, but that it was written off as "not typical" of MS by the radiologists reading it. Fortunately, the specialist viewed each one of the MRI films and interpreted them himself.

He immediately put me on Avonex, which failed to stop the disease activity. Nine months later, I had more lesions, and was suffering from more frequent and more intense relapses. Fortunately, my disease activity stopped coincident to being put on Rebif and my lesion load has been stable for the past two years. In that process, however, I went from RRMS to SPMS.

I have gone on way too long to make a simple point. When MS is the potential dx, time is the enemy. Patients have to find the resources to help them understand the science so that they can become their own advocates. Because the dx of MS is not a precise science, you have to be armed with facts, information and support so that you can ask the right questions and not silently accept a physician's pronouncements.

Diagnosing MS is not as simple as diagnosing strep throat, the flu or a common cold and we have to be aware of that fact so that we can tailor our relationship with our examining physicians accordingly. Otherwise, while time may make the dx more obvious, time can also rob the patient of the opportunity for ABC treatment that can slow or even halt the progression of the disease.

Hi Darah,

What I said was:

"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."



Early intervention is SOMETIMES recognized as advisable for “Clinically Isolated Syndrome (CIS)”, which would still require a specialist's confirmation that that is what has occurred with us:

"The term “clinically isolated syndrome” (CIS) has been used to describe a first neurologic episode that lasts at least 24 hours, and is caused by inflammation/demyelination in one or more sites in the central nervous system (CNS). The episode can be monofocal or multifocal:

Monofocal episode—The person experiences a single neurologic sign or symptom—for example, an attack of optic neuritis—that’s caused by a single lesion.

Multifocal episode—The person experiences more than one sign or symptom—for example, an attack of optic neuritis accompanied by weakness on one side—caused by lesions in more than one place.

While this term is still in use, it is currently under review by MS experts to determine if another term that is more specific to a demyelinating disease process should take its place."

http://www.nationalmssociety.org/abo...cis/index.aspx

You are not suggesting that any patient presenting with some "unusual" symptoms and clear test results should be put on CRABs, are you?

In your case, even though you had some symptoms back to your teen years (so did I), the earliest they could have considered CIS was when you had a clear demyelinating event (and MS was contemplated), at age 40, correct?

IF, as you said . . . they suspected MS while you were in the hospital, your GP was “convinced it was MS”, and you continued to decline . . . I agree whole-heartedly that you should have followed up with additional opinion(s)!!

What I was referring mostly to though, was those people who do NOT continue to decline with CLEAR "MS" symptoms, whose doctors have no clue what it might be (or “other” ideas to test), and whose neurologists (and their 2nd opinion specialist) are CONVINCED that it is not MS. I am not suggesting this means the person does not have MS either. . . but getting “stuck” on a MS-specific dx at that point is only going to get them labeled, IMHO.

In that case, TIME is likely to be the only thing that will get the person a dx of MS.

Cherie

Cherie,

I think you completely misunderstood the gist of my advice. It is simply this: Become informed about your test results and the potential implications thereof. If you wait for "Clear MS" symptoms to appear, the chances of successful intervention (meaning being able to lead a relatively "normal" life with the time between exacerbations being lengthened and the severity of exacerbations diminished) can lessen. That doesn't mean that all isolated incidents are indicative of MS and require intervention; instead, it means to know enough to know the difference between an isolated incident and a string of occurrences that should lead you to seek answers.

Each of us may not be a medical professional, but each of us knows our bodies and therefore knows when to seek help and when not to. I think that a lot of us have a gut instinct that tells us when we're completely comfortable with advice and when we're not. What we don't necessarily have and need to seek is good information.

I agree that being stuck on an MS dx is counterproductive in the diagnostic process. In fact, when I finally found the other board, it was not because I was seeking an MS dx (in fact, I was quite convinced that I did not have MS because of the "expert" opinion I'd received previously), but I was seeking out information about my symptoms and how, if at all, they fit into the MS experience of others. That's why when I put out a plea to those on the board for reference to a neuro, I specifically asked if anyone was going to a neuro who was not an MS specialist and who they had very strong confidence in. That's how I got to the neuro who gave me the neuropsych testing, an LP, a new MRI, a steroid infusion for my ON and even neurontin for what he diagnosed as spasticity. But he wouldn't give me a dx or prescribe CRABs! He wouldn't give me a dx of any sort when it came to my symptoms! He was waiting for me to fall into a classic presentation with classic test results (i.e., O-bands in my CSF, as an example of what he was specifically looking for).

What are often described as "clear" test results by one physician are interpreted to have different significance by another. In my situation, everyone was looking for a "classic" presentation of MS, hence no dx for five years. Too often the doctors tend to look for those classic presentations/test results and we all know that MS manifests itself in a variety of ways, both in the body and in the lab. That is why the diagnostic criteria for MS, although thorough, are not exhaustive. I learned that quite by accident. It's been years since I looked at them, but I remember that there is a category that equates to "other"--it is a catch-all reiminiscent of the phrase, "if it looks like a duck, walks like a duck, quacks like a duck, it is a duck." It gives the physician the option to diagnose if, notwithstanding the lack of a "usual" presentation, everything points to MS. I don't believe I found it on the NMSS website, either.

By arming yourself with information about your test results and their possible significance (or the lack thereof), you are then fully equipped to ask the right questions of the physician that can lead to an explanation of why/why not he/she believes you have . . . fill in the blank. You can ask about treatment options--why and why not to treat (and the pros and cons of that approach) or how to proceed from here--are there certain things that I should pay attention to, symptoms I should call you about, etc. You can then determine your level of comfort with the advice and decide what you wish to do--seek another opinion, go in a different direction, or wait and see. This approach applies not just to MS, but to a multitude of diseases which cannot be diagnosed by a simple lab test.

My MS specialist told me that his patients are all very well informed about their disease and diagnostic process. Personally, I think it's because the presentation of the disease can be so nonspecific and individualized. We continue in the pattern of seeking information even after we're diagnosed for that same reason.

I stand by the proposition that being an informed advocate for yourself can expedite the diagnostic process, leading to a better prognosis.

Isn't that what we all want?

(Admittedly, there is that small number of people who can take this to extremes, but for the most part I think we are all equipped to be reasonable and rational when it comes to processing the information given.)

I agree that adding on "become as informed as possible" to be another good suggestion.

Cherie

[QUOTE=lady_express_44;266929]BTW, not sure if everyone noticed the explanation of T1/T2 lesions on QUIX’s site, but it is also very good:

Hi, Everyone. I'm really glad you didn't feel intruded upon by my posts the other day. Thank you all for your welcome.

I have thought about my offer and I made it without considering my commitments on my own forum. I am the main source of scientific/medical explanations and am also responsible for "moderating" the board, newcomers, disputes, spam and such. There are two of us, but we are both currently very symptomatic. I am sorry for doing this. I think it was the excitement of seeing that other people were able to get something from what I had written. (pretty self-centered, eh?)

Would it be okay with you guys if mainly I discussed the essays I've already written? I would be so glad to clarify things from them. But, getting heavy-duty into new things is really beyond my energy level and rightfully reserved for my own forum. Once we get a good amount of info on a topic, I have been truning it into a blurb for the Health Pages. The vertigo which flattened me first gives me a limited time at the screen and my current exasperation has severely weakened my right arm. After about an hour it will not continue to type.

So my schedule is post, nap, post, nap, eat, nap, nap, eat, post - repeat.

Later I will answer some of Cherie's questions about the visibility of spinal lesions. You all might also want to read the essays called "how MRI's Show MS LEsions," and the one about the difference in the old MRIs and the new ones.

As a quickie, I glanced over the discussion just above on whther we should let time make the decision and my strong opinion is "No." The studies on CIS have shown a clear benefit of the DMDs when used earlier in the disease over their use later. If we are to slow down the monster we must be proactive in realizing that earlier symptoms which may be gone now, but were suggestive of demyelination, must be pursued aggressively! Some of the people on my forum went through 6 or 8 neuros before finding one who was creative and confident enough to put atypical symptoms, signs, and test results together to make an MS Dx.

The next essay I will have up on our "Health Pages" discusses the many ways (three of which happened to me) that you can have a "negative MRI and still have MS. One is how a frend of mine presented. She had so many "invisible" lesions (but lots and lots of symptoms) that her first MRI abnormality was frank atrophy!

So, I guess I am saying that, as much as I would like to be a day-to-day member of two forums, I don't have the oomph or strength. But, I do a lot of work to write the essays, they are already done, and I could easily pop over here from time to time and answer questions from them and talk to you all.

The zest for information here is stimulating!

I'll be back to answer Cherie's queries (it rhymes!) soon.

Quix

Quix, as with any member you can post when and if you feel like it. You will find all of us in different stages of MS, some of us doing better or worse than others.

You will also find some of us have been dx'd a long time, some newly dx'd and those in limbo. Which makes for a wide range of topics.

Another option you might be interested in - We have the Stumble Inn which is for non - MS topics and can be a nice break from the reality of this disease.

NeuroTalk offers many different forums and when your up to it please take a look around and feel free to jump in anywhere.

As for things you have written and would like to post here: I don't see a problem but as you can tell you will be questioned

Thanks for dropping in again, Quix, and I totally respect your decision at this point. Please do not feel you need to answer my questions, especially while feeling so rough. I just got excited myself, and I apologize for that.

Cherie

Cherie, what I meant is that I know some of the the info. I could find a good source for you. My best source to begin on all topics of MS is The Multiple Sclerosis Handbook edited by Stuart D. Cook, Fourth Edition, 2006, pub. Taylor and Francis. I bought it on Amazon (about $150). Parts of it are too technical for me and parts would be readable by anybody. He delves into the raw science that is making up our knowledge - each chapter having 100's of references of studies and articles. It's a tough read, but very worthwhile. Q