Okay, I know that y'all aren't MD's and all that, but I've been looking and looking and just the way that things are worded (and maybe the way that my brain ISN'T working today) I can't understand this point.
Which comes first, the actual lesion or the flair? Does the lesion cause the symptoms and the horrible flairs or do the symptoms show up first, the demylenation starts and the lesion(s) show up sometime down the road? Furthermore, how long does it take for the lesion(s) to show if it's the latter? I mean, I know everyone is different, etc, but, on average is six months enough time? Too long? Not long enough? AND.....do the lesions last forever once they there? Like I don't have to try to 'catch' a lesion at the right time do I? Like, please tell me that I haven't missed my window here. Does there seem to be a correlation between the symptoms that remain AFTER a flair and the number of new lesions? What I mean to say is, since I've kept several symptoms, that were new to me 4 years ago, does that indicate that there "SHOULD" be several more new lesions to see?
I also hear a lot about 'active lesions'. These, from what I've read are the ones that seem to change in someway with contrast. Are those the newest lesions or the ones that are causing symptoms right now?
I'm so confused and I'm trying to not search around on the internet too much because I know that that can cause a good case of CYBERchondria, but, regardless, I'm trying to understand what they're even looking for with my new MRI tomorrow. (I'm a little nervous if you can't tell. I'm nervous that they won't find anything and I'll have to start over AGAIN! I'm also nervous that it will be MS and then what do I do??)
I'm sorry that there are so many questions here and I know that there probably isn't anyway to answer most of these but even if someone or several of you, could try to explain it to me a little bit, it would help.
Re: Which comes first? The lesion or disease activity?
I think the best way to answer this is to rephrase the question since some people have lesions but have never had what would be considered to be a real flare.
That said, disease activity is what causes lesions and as you know, in some cases they can take a VERY long time to show up. When someone has a flare and a doctor orders an MRI, sometimes a new one will be apparent or they will be able to see an old one acting up. However, sometimes NOTHING new will be seen. An "active" lesion is one that lights up with contrast so yes, then it is clinically clear that something is happening.
Some sx have a correlation to where there is scarring but it's far from an exact science -- there are people who have many sx and few if any lesions and people with many lesions who have few sx.
Lesions do not go away but just like a regular scar, can get smaller and sometimes so small that they are not visible on an MRI. The active ones can be new or old ones acting up. They can also light up during the REmyelination process.
You've also, however, brought me to my next question. REmyelination? So, this is possible, then.........is it when the Myelin regrow or reform or something? So, really you could have 50 lesions one year and 40 the next year, but, even those 40 could (in theory) be in new places? PLUS- what happens if you're DX with MS due to sx and number of lesions, etc. and then on a follow up MRI you only have 4 lesions. Does that mean that you don't have MS anymore (or that you never did)?
Again, I know that you're not a doctor, but, this whole DE-myelination and RE-myelination, all seem so forgien to me. My Mom doesn't seem to ever have to go back for follow up MRI's or anything. Neither does my Aunt or MIL. I'm so confused about this whole issue (as if you couldn't tell).
Once, your firmly DX with MS, do you have to keep "proving" that you have it or is that that and let's move on with treatment?
Yes, remyelination is possible -- it's just like the body's other ways of trying to heal itself. But once the attack comes on (with or without presenting sx) there is a scar and those scars can cause mightly problems too, whether or not there is new activity there denoted by lighting up with contrast. Really severe problems can also happen when the myelin no longer can protect the nerve so the damage is then done TO the nerve itself.
If you have 50 lesions one year, you're not going to have 40 the next. They're always going to be there (scarring) but it might not be visible on the MRI. When people say that their lesions have "disappeared" it only means they're no longer visible.
Once you have MS, you have it. At the present time, it is a chronic disease without a cure. Whether or not you are presenting sx, you still have it -- these are periods of remission. It doesn't go away though. If you are dxed with MS, you do not have to keep on proving it. I have seen cases where people have had their dx taken away but this is because a doctor has decided that they were dxed with MS in error. Again, if you have MS you have it.
Re: remyelination, a radiologist is the one who told me that lesions can light up with contrast during this process. However, I don't know that there's any way for a radiologist or doctor to tell from the MRI what is going on just from the films unto themselves-- I'm pretty sure that all they can tell is that there's "activity".
Your relatives may have reached the point where a neurologist thinks that MRIs really won't be helpful for any reason. I don't know their situations so it's hard to guess why. I've seen others who have MRIs rarely and have talked about "treating the patient, not the MRI".
Rebecca, what is your goal? Obviously, you want a dx to explain what is going on with you and to put a name on it -- perfectly understandable. Are you also anxious to find out if it's MS so that you can be put on medication?
The available MS drugs currently do not stimulate remyelination but you are correct in your thinking about a way to approach MS, Nenu. There is an organization called the Myelin Repair Foundation that is dedicated to researching this.
My "goal" is multilayered. First, yes, I'd love a DX, be it MS or something else that explains my symptoms and the brain lesions. I'm still confounded as to understand how it could be ADEM. My understanding of ADEM doesn't meet my situation AT ALL!! I won't bore everyone with the reasons why or why not. But, furthermore, I'd love to know more about the whole process. I'd love to know if the things that MRI's have said mean anything. I've had them with so many different doctors, that I'm afraid that I've sabotaged my own DX. Again, not to bore everyone with my pity party or "oh, poor me" but suffices to say that I've had some pretty horrible treatment by the medical community and they've missed some pretty large things and let me suffer for years with conditions simply because they thought that I was "just overweight" or "just lazy" or "depressed" or "looking for attention". I was allowed to suffer with diverticulitous (for example) for nearly a decade, even though my abdominal CT clearly stated that I had it. I only found this out when I started back tracking and getting copies of all of my own tests, procedures, etc. This is the easiest example that I could give, but, unfortunately, not the only one. I know that several people have had a hard road and a hard time getting their MS DX. Again, I'm not saying that I even have MS for sure. I don't know one way or the other. I'm just saying that I've had to be my own advocate and even, my own doctor too many times for me to have really any faith in the medical community as a whole. That being said, I'd love to know the basic process of MS and be able to piece it together with the various MRI's that I've had over the last 20 years or so.
Also, I'd love to know more about it just for the simple fact that I'm surrounded by people WITH MS. I'd love to be able to carry on an educated conversation with my Mother or MIL. I'd love for them to know that I've taken the time to try to understand what their body is doing to them. I'd also like to able to tell them, "Hey, did you know that XYZ could maybe help your brain RE-myelinate?" If I could help them, I would. My MIL has been in a wheelchair for most of her adult life, while my Mother seems almost uneffected. Why? What's the difference? Does one have more lesions than the other? etc. I would LOVE to be able to figure it all out. (As would many a clinician, and each of you, I know!)
Hell, I've even teased that I'm going to go to medical school so that I can help others and maybe end up being able to help myself!!
My goal isn't to force anything. It is what it is, plain and simple. But, I've learned, or rather been taught, that if I don't stay "on top" of my results, etc. I won't get anywhere. I don't know if it's just my crappy insurance that makes me go to crappy doctors or what. I don't know if I just have terrible luck with picking a doctor. I don't know if I'm barking up the wrong tree. I really don't. What I do know is that I've been sick a really long time. I have several MRI's that show a "demyelinating process" whatever that means. I know that my Mother has MS. I know that I've had something wrong with me for years and whatever it is it's progressing. I know that I've been in and out of ICU's and ER's and I'm going broke paying for those bills, because I couldn't breathe on my own or had a seizure that wouldn't stop or I was in so much pain I couldn't stand it anymore. I know that something is wrong. I know that I deserve to know WHAT is wrong. And I KNOW THAT SOMEDAY I WILL GET AN ANSWER!!!
So, my goal is to be the best person I can be. To help my family with MS. To better understand this horrible disease and (maybe) even figure out what's wrong with me in the process. Does that make sense?
Last edited by Beccapooh; 05-12-2008 at 03:12 PM.
Reason: Tried to clarify my point
I do understand what you mean about sabatoging your own dx. If that's the case, it might be a good idea to start fresh. Maybe with a brand new doctor and in terms of history, start with what is happening NOW. Work your way backwards. If your sx are consistent with MS and your mother has it, these are reasons unto themselves for you to be taken seriously. As you know, while MS is not considered to be hereditary, there is a suspected genetic component.
In terms of MS education, I commend you for wanting to be better informed because of your loved ones. Unfortunately, there is nothing to tell them to take re: remyelination though!
It sounds like your MIL has PPMS or SPMS while your mother has RRMS (and from what you're describing, at least so far a mild course).
If your MRIs have been indicative of demyelination, it means that a demyelinating disease is suspected. There are other demyelinating diseases besides MS but MS is the most common one (for what it's worth, my MS specialist says that 90% of demyelinating diseases turn out to be MS -- one doctor's opinion).
I think that you might do well to ask questions about your own situation to the doctor. When you get the results of this newest MRI maybe we can help you. (Hopefully you will get the radiologist's report before you go in for the doctor's appointment.) In general, the answers we get are only as good as the questions we ask.
All it takes is ONE doctor who will listen, Rebecca.
Agreed. I've already told the facility that I'll need the MRI on a disk (that's their peferred way of getting a copy. It's really cool, actually. I already have one!) and a copy of the report faxed to me. They were very nice about it. Which made me feel badly, for being so addimate (spelling? I can't think today, sorry) about it.
I will, for sure, have both of those in hand before I even make another appointment with a NEW Neurologist! (Remember this MRI was ordered by my wonderful and over worked GP.) The Neurologist that he works with, officed right next door hasn't been very receptive to anything I've said, so I WON'T be using him. I'm going to try to go to see an MS specialist. I know that I've posted that thread before and I'm going to revisit it and maybe even bump it up again. I'd love to find a good doc that takes my insurance that WILL listen.
I COULD go back 20 years, but I don't have to. My body has been screaming quite loudly, for the last four years NONSTOP! And although the B-12 has helped. It isn't the 'whole story'.
We'll just have to wait and see, I know. But, honestly, I feel so tired of searching. I'm just about ready to give up entirely. Really, this is my last chance for a diagnosis, for I don't have the strength to keep on pushing. If this isn't it, then all is lost and I'll just keep getting worse, until alas, they find it by mistake in the ER/ICU or I just drop dead from it. I know that that sounds dramatic, but, if things get as bad as they did two summers ago, then it's a very real possiblity.
I'll let everyone know what I find out when I find something out.
And, please, if anyone has anything else to add to this thread, please do. I'd love to learn as much as possible about MS. I really would.
Well, make sure you bring that old disc with you if the radiology facility isn't the same one you used last time or if (for whatever reason) they don't have the old one -- the comparison is often a very important piece of the puzzle.