Here is my question....are mri's really a true "compass" of whether MS is progressing, active or staying the same? Some mri's show no new lesions, yet we have new/different symptoms... some mri's show new lesions but we feel nothing new. It seems that too often we wait for that MRI almost with the idea that if it shows something new has shown up or a "possible" new lesion.. we feel badly, worried and think it means it's getting worse or progressing. When in fact, that "possible" they see could be nothing..could have been there all the time and they didn't see it last time or it could be a new one that won't cause any issues.

I have read many articles by doctors who all say the same thing, MRI's should never be used to determine the course of MS. They don't necessarily determine whether medicine is working or not. How many relapses you do or don't have, how you feel on a daily basis, what new or lingering symptoms you have... these are the things that determine what is going on.

Yet, many neuros recommend an mri every 6 months or so, some 1 X a year. We subject our minds and bodies to the whole wait and see process. We pay out the wazoo for medical insurance or more so if you don't have insurance for something that I wonder how much good does it for US.

Just a thought I have had on my mind for some time and wanted to just throw it out there.

MRIs can serve as measurements of progress, but they are in no way absolute. You can present without indicators. Nerves are so small that it may be difficult to ascertain new lesions until there have been many. The MSAA recommends MRIs yearly. I have not had any MRIs because I have PPMS and the doctor measures my progress according to my journal and my physical ability. I rely on her to make the necessary orders. If she needs an MRI, then I will have one.

If you are Relapse-Remitting or other early stages, then the Dr. will often do MRIs 6 months to a year to enable them to make the best informed decisions/advice for you.

Hey tuckersmom.
I think that it is pretty conclusive to say that MRIs are only 50% of the diagnostic tool needed to measure progression and how well the meds are working, the other half is the actual exam by the doctor intertwined by how you have done since your last visit.

For instance, if you have had several relapses in a 6 month period, an MRI is necessary to use to see what exactly is going on and whether new lesions are developing..
However, if in 6 months, you have had very little change, nothing drastic has happened and you feel the same as you did before, then waiting a full year probably isnt the worst thing you can do, MRI -wise.

Then again, if you start an interferon like Rebif. It takes 6 months to start working, really start working. The doctors usually insist on doing an MRI during that time, to give them a baseline for what they will see in another 6 months to see if the drug is working or not..

I just had a set of MRIs after having them only 6 months ago, because it was one full year on Rebif...and also because according to my MS doc, ive lost quite a bit of strength and muscle on my left side....he wanted to rule out that new lesions were developing and see what was going on....the MRI showed very litttle change...which basically says that the Rebif is working, but the MS is affecting me differently as far as strength goes...

I think that keeping a jounral is the most important thing for a doctor to reflect on and having at least yearly MRIs is very important, especially if you are on any meds...would you really be able to assume that your med of choice was working because you "Feel" fine, if in fact lesions are developing which might not start affecting you for another year- thus proving that the meds arent the right ones for you? Id rather see what is happening along with being examined every 6 months...
do you think differently?
Nikki

Hello Nikki... I have been away for a little while and have been catching up on some reading. I do agree Mri's are needed for initial diagnosis and can be used to help determine if new lingering symptoms are being caused by new lesions forming. We all know the only way to see them is through a good MRI read correctly.

My issue with doctors these days is that they seem to order them as "routine". I don't agree that just because someone has a new lesion it necessarily means the medicine they are using is not working. It may mean their MS is aggressive and without the medicine they are using they would be much worse. I don't know that I have read that there are true variables on which drug works best if you have lesions in any certain area. There may be info. out there that tells us that but I haven't come across it yet. My point being that typically people change meds because of the side effects and how their body tolerates it or doesn't tolerate it. I don't know that changing the meds. because one has a new lesion show up is going to help change the course.

Another tidbit I have run across in a prominent medical publication is that they (whoever "they" are) believe that injectables only work for the first 3 years. After that they have no studies that show the drugs are of benefit. How they can truly say that I haven't gotten that far yet, but am still reading.

You have read enough of my posts to know that I question doctors and the medical community very harshly. I read all of the posts on this site and others and feel sick sometimes at watching countless people be what I consider to be manipulated by doctors to have tests and see this one and that one and basically run in circles when at the end of the day.... is there truly any REAL information coming from all of that.You have to ask yourself, is this test going tell us anything that will change the course of what I am doing already?

I do believe there are good drs that want to do whatever necessary to answer questions and get a diagnosis and method of treatment that will help their patients. I am afraid they are dwindling. Insurance costs a fortune, taking time off work, time away from family, the mental stress of all of it...it costs US not them. Searching for answers is exhausting mentally and physically...I just wish many of us weren't searching in the dark and running into walls.

Sorry for the long rant. I just read alot of medical publications and try to stay up on the latest papers written by many doctors. Ofcourse they all have their own opinions but when I read 4 or 5 that start saying the same thing...I start to listen. Not very many people have time to read as much as I do so in some way maybe I feel responsible to all MSers to just throw ideas out that I continue to see, just for the one chance someone may benefit. It is in no way to be confrontational. That is the last thing I would want to do. I pray it is not seen that way.

Thats alot of information you put out there and all of it very interesting! Thank you. I love your posts.....:D

My doc seems to think that anything less than continuous relapses or a significant change (which he describes as 4 or more NEW lesions showing on an MRI might constitute a change in meds...to date, having only been on Rebif one year, that hasnt happened to me. I deal well with the side effects and have had very minor symptoms show up in the past year, most of which have come and gone...typical MS stuff. But I have never been told that the injectables only are used in the first three years, or that they might not be working after the first three years. May I ask where that came from, only to be able to tell or ask HIM in the future? I do know people who have been on REbif for more than three years, truthfully, they seem to be doing so well on the drug that I cant blame them for staying on it.....but you bring up a valid point, is the drug helping? Would they be just fine without it? Did it prevent things in the beginning which MIGHT have happened? All of this is unanswered.

Im having the same issue with birth control. My doc is one of the ones doing the estriol study in NJ. He insists that I need to stay on the b/c pill. My gyn insists that the risk outweighs the "possible' benefit. Everyone is leaving it up to me! Since no documentation is actuallly finished proving the taking the pill helps prevent relapses, and since I got dx with MS after being on the pill for 20 years and have had several relapses since...my decision is to go off of it in November...however, whos to say that it didnt help keep my MS at bay all these years while I was taking it? Maybe I would have had symtoms much sooner, or they would have been much worse? This stuff keeps me up at night.

Too much to think about. Did you ever think that we all might be better off ignoring everything that is out there to read, staying away from doctors and letting the disease take its course? That sounds horrible...but you are right. The stress, anxiety and worry cant possibly be making any of us any better!

Hugs to ya.
N

Nikki... I think you are smart to stop the bc pill. If I remember right there are 3mg of estriol in pill per day... the study is 8 mg so MAYBE it has helped but since the dosage in bc pill is less than 1/2 I have my doubts but what a blessing if it has. I know this decision has been hard for you and it brings into question what to do next or what other options you have. You are a very smart lady. Trust yourself.

I agree that maybe just letting ms do it's thing may be an option for some. There is proof the meds work to slow it down so atleast it is an option for some. I just wonder sometimes...does the meds we all take for any number of conditions do more harm in the long run than good. I don't mean MAJOR stuff like cancer treatment etc... but there are many others that I wonder about especially autoimmune conditions. There is no particular plan for these types of diseases given they are so individual. That in itself throws so many variables into the picture that many are so overwhelmed they don't know what to do so rely on over scheduled, under educated (about latest news) drs. throw them into a pile.

You're right...it's alot to think about and it does neither of us or anyone else much good since there are no real answers ...yet.

Hope you are having a good day.

Lisa

Hugs Lisa.
Actually I am fighting off the flu and a head cold. I feel lousy! Too much heavy thinking today will send me over the edge so Im cutting this one short. Thanks for the compliments, and I do think that Im doing what I have to do for me..besides, I can always go back on estrogen if I have too...
I love reading what you have to say -honestly, you make a ton of sense..im just tooo foggy today to write anything which will equal your posts in sensibility!
I hope you have a great weekend and Ill catch up with ya soon...
Nikki

I agree that maybe just letting ms do it's thing may be an option for some. There is proof the meds work to slow it down so at least it is an option for some. I just wonder sometimes...does the meds we all take for any number of conditions do more harm in the long run than good.
Lisa

Many meds have a limited use due to their potential to harm major body organs. You need to read the manufacturers guidelines and do not exceed them. Toxic build-up in organs will vary person-to-person and your body will vary as to the time it takes to remove the toxins from your system.

I had a pastor who had steroid injections for his arthritis and bone disease. He eventually died as a result of organ failure.

The FDA has in place various limitations. You may not "fit" the average, so you need to be tuned into your body.:angel:

Good point dear sir! That is part of my issue. I have a friend with Lupus. Every single time she has a flare up, big or small, they give her a round of steroids. She takes them without question. She has gained so much weight with the steriods because she is on them almost constantly that the weight is causing health issues on top of the Lupus! The most apparent thing is that even on the steriods... the flare ups seem to last just as long as they did back when she didn't use the steriods!

So.... do the steriods do any real good or do the drs. have no other option and don't want to say..."you just have to ride it out"... so they just give her the steriods . How much damage are the steriods doing that she doesn't even know about yet? They are already having a negative effect that she can see.

I don't know a definitive answer...just thinkin'

Have a blessed weekend!
Lisa

Steroids are effective for the treatment of some diseases, but the type of steroid and how the person can handle it vary. Sometimes the treatment is as painful as the disease. Generally the treatment should entail close supervision and the risk of organ failure is a high possibility.

My Aunt died from lupus. The doctor treated her for 2 years on steroids and told her he had reached the limit on treatments available. Lupus finally attacked her heart muscles. She was able to be off the steroids the last year of her life and passed peacefully in the home of her birth.

Quality of life, to me, matters greatly. I choose to be as little of a burden and to remain as independent as possible.

In subsequent generations doctors may look back at the treatments we have today and think "barbaric".

Each of us needs to remember to make our decisions based upon personal beliefs and to respect one another. We are all in this together. God willing, we will finish the raise together.:angel: