My neurologist retired last summer. Before I saw his replacement, I was asked to get an MRI. Fair enough - my last one had been about 2.5 years earlier. It told me that, yes, I have MS, and that it is progressing, but pretty slowly.
When the new and the old neurologists have suggested that I get MRIs on an annual basis, my question was "why?" - I wasn't being snide, I really just want to know the logic behind me getting an MRI every year. I have fairly mild disability from my MS, I haven't switched drugs, I haven't had a relapse in several years. I guess I don't understand what (if anything) we would do differently, based on the results of an annual MRI, given my clinical presentation and the fact that my progression seems really slow.
The answer to my "why?" question usually is that "it helps us monitor things." This is when I usually ask what, in particular, would prompt a change in the status quo. Depending on the day, the answer I get ranges from, "you are right" to "do it anyway."
Let me reassure everyone that I am not against MRIs when they are warranted. Starting a new med (read: I have RRMS and just started treatment. How often should I be getting an MRI?) or experiencing new or worsening symptoms would have me much more enthusiastic about getting an MRI.
What about you? Does your neurologist have you on a schedule for MRIs? What is it? What is the rationale?
After being diagnosed my doctor had me do an MRI each year before my annual checkup with her, for the first 5 years. Year 6 she said to skip the MRI. The rationale being that at first she wanted to monitor things, but now that my condition appears to be stable MRIs can be less frequent. Since I haven’t had a relapse in 4 years, I suspect we’ll skip the MRI again this year when the time comes.
My doctor has suggested that a relapse would cause her to want me to undergo an MRI scan, obviously to gauge what new lesions might be the cause, but that otherwise I might just have them as infrequently as every 3 to 5 years if nothing else changes.
Personally I have no aversion to the MRIs. I’m not claustrophobic and can lay still for the duration of the scans. I also find the industrial sounds of the machine bizarrely musical (even as I have the technicians blasting loud music I’ve provided to them to play while I’m in it). So, as long as my insurance covers the cost, I’m fine with the scans.
I too balked @ the idea of annual MRIs. I haven’t had a relapse except for what was probably the first one before I was dxd (I was having issues with walking and foot discomfort; I thought it was all about finding the right pair of shoes).
And because what led to my MS dx was being dxd and treated for a herniated disc, I had ELEVEN MRIs during that process. I figured that was enough.
But I relented and had 4 without and 4 with contrast @ the end of last year. It WAS informative. Two lesions (one each in thoracic and cervical spine) had gone away. In the meantime I had new small lesions in my brain.
I didn’t understand that because I have had no relapse. It turns out there is something called “silent lesions.” Who knew?? So you CAN develop lesions without having a relapse. And I can see where my neuro would want to know about that. Especially since I have some left leg issues and it turns out there’s a lesion in that part of my brain.
I am currently on 6 mo. MRIs. At one point, I was merely on an annual schedule, but after my last relapse, the doctor saw so much new lesion activity, that I was switched to a third medicine (in five years) and he wants to watch it more closely. My main hope now is just to slow down from going to Progressive from RR…
I have an MRI every 6 months. There is good reasoning behind this. I am on Tysabri, have tested positive for the JC Virus, have had 67 infusions and was on zenapax/daclizimab for 4 years prior to that.
Even if this was not the case for me I would support having an MRI once a year. MS can be active without us even knowing it. At one time a friend of mine was doing good, had an MRI simply because it was time for her annual scan. When she met with her MS doc, she had multiple new lesions. Her treatment dose was adjusted and this did make a difference on her next scan.
last post continued….
Just like MS we all are in difference places in our journey living with MS. Sure I think an MRI every 6 months is needed in a case like mine. Yet there are also people living with MS that have been symptom free for years, their MRI’s are good and it is great that they don’t need an MRI even once a year.
My wife has an MRI every six months. Like Jonna (above post) my wife is JCV+ and has been on Tysabri for 5 years. The MRI is useful in early detection of possible PML.
I too just started Tysabri after testing positive for the JCV antibodies. Jonna commented about 67 infusions? I was told I would be limited to 12 infusions max and that brought my risk factor for PML down to 1 in 250. My 2nd is next week. I too get the silent lesions, but also chronic Exacerbations. I went from walking/hiking many miles a day. To having no use of my legs, very weak torso and upper body in just over 16 months. My neurologist basically did nothing during that time. I went to get a second opinion from an “MS Specialist”, keeping my neurologist informed the whole time do she couldn’t say I was going behind her back. So far he has just made me feel like a burden. At least my old Neurologist just never had time for me. My 2nd visit with the Specialist, he failed to recognize I was having an exacerbation and sent me home – 4 hours away from medical services. My follow up appointment with my Neurologist ended up with her Nurse yelling at me in front of an office full of patients for going to the Specialist. I sympathize very much with the woman who committed suicide. US laws need to be revised. The worst part of that story is if she had life insurance, it is now null & void due to suicide and you know her family is dealing with a lot of medical bills! I’ve put my husband through hell! I don’t know whether to pray that Tysabri brings my life back to me or to get the PML and die. Either way will put me out of this hell I’ve been so-called “living”, only that the first option is temporary and guaranteed to get worse; as the second option, the people around me would eventually be able to find peace. When you are bedridden, cannot use the bathroom or feed yourself and know you will get worse – how do people call that life?
Continued:
I have never had an MRI Schedule, but believe that I wouldn’t be where I am at now if I had annual MRIs. I was diagnosed in 2003, but they said from the amount of lesions, I had MS for a long time. Nothing is worse than your doctor making you feel like a burden and to slowly watch your husband have the life drained out of him by your condition. He is my hero. He has handled this so much better than me. It kills me to be the cause of his agony and sleepless nights knowing my next exacerbation could leave me a vegetable! It kills him that he his so helpless to make me better. I’m sure all families go through this hell eventually. It isn’t right to be forced to live as a vegetable than be deemed as a suicide. The laws need to be changed!!
My neurologist is the head of the MS Center. She ordered head/spine MRIs during my diagnosis phase. (I had already had one head MRI from a local family doctor.) I have many lesions, so many the lab didn’t count them all! As I remember it, the lab report just said “>50″. I didn’t have any active lesions, however! Go figure!
This spring I just had my second MRI for this doctor. It was five years from my first MRI. The results were “no new lesions” and “no active lesions”. I guess I can’t ask for anything better than that.
I have not had a flare-up since the initial one. I’m on Copaxone. My doctor says that her Center is involved in research on why (stated in my terms) some people have a large number of lesions and do very well and others do not.
I get an MRI annually. When my MD tells me nothning hs chznged, I trust the drugs are doing whae ehwy are upposed to. i have been using AVONEX since 1999
I am not for regular MRIs…even if insurance pays. I do not believe they are helpful to the doc once it’s reported the lesions are too numerous to count.
As a patient in a study for MS in a university clinic here in Australia. I see the doctors twice a year for examination and briefing. I am scanned once a year regardless of any signs of further progression or relapse. I just went through my fifth one just a month ago. Luckily the latest scans are clear except for the residual damage from prior episodes.
The more of them you go through the easier they become. As as it is a part of the research I luckily don’t pay for it only with my time. They are noisy and boring but I guess worth it as a tool for recording changes in the brain and spine. I guess we have to do what we can, and MRI scans are not too bad just noisy.
Hope you are all well. (“,)
I have had MS since 1979 I was never on a drug and had not ever had an MRI till my neurologist retired. My present one I have been with about 5 yeas and now have tysabri ifusions monthly for the past 3 years as soon as it was available in Australia I have a MRI every 6 months and the reason he can check on MS. as you arfe aware this drug is supposed to holt progression of disease. Suppose they must be safe enough or he wouldnt order them. Also visit him every 6 months, after the MRI.
I enjoy reading your newsletter we have had only 1 death from PML in Australia as far as I know and believe there will be a trial in Melbourne this year on ccsv I am very interested in thatl Yours Colleem I am 67 years dignoed before MRI had to have a test from fluid from the brain I remail your faithfully colleen
Had my most recent MRI a month ago–with contrasts–of the brain. Came back “within normal limits” whatever that means. All the whacky symptoms I have are certainly not within “normal limits.” The day after I went to the Dr. something started in my left eye that seems like Optic Neuritis. The smudgey vision is still there nearly a month later–and periodic eye pain and nystagmus. Normal limits?
I have daignosed as ms from 3 years ,I had MRI about 5 times ,my dr. said that once yearly is enough if the case is stable.
Julie, recently, i’ve had an MRI of my lumbar area, in one of the Fonar upright MRI machines, but due to disc bulging and other nerve problems in my back, this type of MRI–as well as the standard, lay-down kind cause nothing but terrible pain–and make my back condition worse.
Additionally, I was warned against being sedated (IV or oral) due to a heart issue (diagnosed), and they will not let you use a TENs unit while taking the test. I’ve mentioned this to my neurologist, but he throws his hands up. He–and few others understand how my condition is unique to myself–the things which work for everyone else do not work for me, so what can I do?
In the past few months, my symptoms have returned and I do not want what was said to be relapsing/remitting MS to turn for the worst.
Lastly, I need to get a test for interferon “neutralizing” antibodies and Interleukin 17…no local labs do either. Do you know of any place which performs the tests? They are crucial, as it will tell me if the Rebif is even working anymore.
Thank you.
I have no annual schedule for MRI’s. In fact, all 3 of my neurologists have, when asked, told me that MRI’s are basically a waste of money. I had my one and only 6 years ago when I was being dxd and haven’t had one since they were diagnosing me.
I, too, have an MRI every six months because I am on Tysabri, and the MRI is the best way to make an early detection if you have the JC Virus. I do not mind having an MRI, as I have had just about every part of my body MRI’d at least once – I have lost count on the number of times on my back. I just look at the MRI as part of my M.S. care, and it does give me a very “magnetic personality” and helps me to “attract” many others with a similiar “metalic mind.” Dee Dee
Hi Julie,
I have to agree with everything you said. I have been on Avonex since day one, not anything crashingly new has happened (different symptoms at different times that can last for a short or long period). I had 2 MRIs in total and came to the conclusion that I would rather use my 50 dollar copay (if it isn’t more now, I don’t know) for groceries since I am on a fixed income. If I really felt strongly about MRIs, of course I would find the money and live on beans if I had to! Oh yah, for me, looking at my brain progressing with additional lesions doesn’t do anything for me but make me depressed anyway, so for me, I’m better off without the upclose and personal look at my brain.
I am in New Zealand and it seems to me that our experience with MRI’s is exactly opposite to yours. I was only given the opportunity to have one after all the Neurologists and other Doctors could not agree on a diagnosis. This was after 26 years of tests in 1996. Four Neurologists checked the MRI’s and decided that after all I did have MS. I have spoken to a number of people here and each time it is the same thing reply, the MRI’s are a last resort. I think the reason for this is the financial expense to the health system. To top it all off, having moved to a new area, my new Doctor and Neurologist are undecided as to whether I have MS. Needless to say I have now refused to see the Neurologist and am just trying to make the best of it. MRI’s are like GOLD here!!
Kind regards to all ClangerX.
Ooops! Sorry Rex, that first MRI WAS meaningful (also the gold standard in diagnosing M.S. around here).
I am saying that AFTER that first one where you get the “lucky” diagnosis, the following MRIs are pretty anti-climactic IMHO.
My MS doc schedules MRI’s annually, they have been stable since I started Tysabri in 12/09. I have a JCV test every 6 months (negative!), along with CBC to check white blood count and a liver function test. I’ll continue to have MRI’s as often as my doc recommends, I want to know if I’m getting new lesions (silent or active). I want to know if the Tysabri stops preventing lesions so I can decide whether to continue taking it. Best of luck to all of you!
Hi There,
How I can start a new thread?
I just want to start a discussion on Multiple Sclerosis (MS) and Neuromyelitis optica (NMO).
How they differ…
How to differentiate….
etc….
Thanks & Regards,
Arnab
Im 29 but was dx at 16. At first I had MRI’s about once a year but once progression was seen it changed to every 6 months. Ive been doing them 2 times a year now for about 7 years. I was told it is to monitor also but they also explained that if they see a lot of progression its likely that the treatment isnt helping as intended.
I had very mild symptoms for many years but my lesions were telling a more severe story. I have been on all available treatments since my dx and with each one my lesion progession would slow down for a time but then continue again. If i hadnt had the MRI’s they wouldnt have known to change my treatment which has given more time in remission.
I guess its all on how each neuro works. Ironically now that my lesions are under control my symptoms are not. Ive read many studies that have found that there is very little coorelation between symptom severity and lesioning. So its hard to know whats what anymore. I guess i figure if that dumb box of noise can help than ill get in it.
Dana:
I have been on tysabri since it was released the second time in 2006. I was part of the study about the JC Virus and PML. The study confirmed the correlation between the virus and the possibility of PML while on TYSABRI. I am negative for the virus which originally unknown i just had to make the choice that treatment weighed more than the possible dangers.
Now that they require the test for new patients on the medication it can help reduce your risk by limiting the number of infusions when you are positive for the virus.
They most likely would give you a break from treatment and decide based on your labs and tolerance if you can safely continue the treatments. The medication can last in your body for up to 3 months so you wont be completely unprotected.
The better news is that at least 2 new treatments are close to being available! So once your year is up you may have an even better option! Good luck with everything
I was dxd when I was 25. I knew what it was, the tiredness, inability to walk properly, blinding eye pain. The first GP I saw told me that ‘its all in your head’ and sent me away!! The second opinion was spot on, knowing My mother has MS.I went for my first of many MRI’s (its a funny machine that sounds to me like the old ZX spectrum loading a game!!) My first neurologist wasnt very good IMO, steroids, steroids and more…steroids! But he went to work in another hospital in 2009 and I got a brilliant new one! I said straight away- I dont want more steroids! So I started on Tysabri. I was in a wheelchair then but after only 3 infusions I was able to walk, still with a little spasticity but I was amazed!! So was my neuro, I’m his star patient! Or so he tells me. I went into it with my eyes wide shut, and it was only this year (2012) we had the Bloods taken to see if we were at risk of PML. I was negative, but you know what? I’ll stay on it whatever furthur results I get. This stuff is A M A Z I N G!!
rstand about frequent MRIs is that it allows doctors to monitor the progression of your personal MS. It is very difficult for a doctor to monitor you as a patient. It is impossible for your doctor to guess where you are with your disease. MRIs speaks to a trained Neurologists. If you are fighting the disease then by all means get it. If your disease has been consistent for sometime, get the annual checkup and think of it as your annual physical.