New to the crew with questions

[Squirrel1270]

Morning, I've just recently joined the community, even though I was diagnosed 8 years ago. My body's 50th birthday present to me... yay! I've never had the chance to talk with anyone actually living with MS. I've always had friends who had family or other friends that had it. I have a question (probably first of many) concerning MRI's. How often should I be getting an MRI? Like I said, I was diagnosed 8 yrs ago when I had my initial MRI/spinal tap. Since then I've only had 1 other. Should I be getting them more often or should I be finding a new neurologist?

[hopeandgrace]

My neurologist told me once a year or so. Thankful for good insurance with no copayment for it!

I also have had no change in my lesions since diagnosis 7yrs ago. Maybe for others their neurologist wants them done more frequently?

[Squirrel1270 in reply to hopeandgrace]

Thanks for the response. To tell you the truth, I don't know if there were any changes in my lesions from my diagnosis to my second MRI. Might be something I need to ask about. Insurance isn't a problem for me either.

[Kenu]

Good morning and welcome to our crazy group of MSers where there are no stupid questions and answers are from people living with MS. First thing is having a neurologist that specializes in ms. When I was first diagnosed I had yearly mri until things settled down and then I had mri when I had problems going on and time for change of DMT. I have been pretty stable now for the last 10 years but I still have an mri every 3 years. I think it depends on your status and your neurologist. Hopefully you are doing well and welcome again to our group 👍🏼🙏😉

[Squirrel1270 in reply to Kenu]

Thanks for the response. It could be due to the fact that I haven't had any real issues since my diagnosis. Meds have stayed the same. I'm thankful for that.

[NorasMom]

If you've been stable with no changes, then there's no need for frequent MRI's. If you've had noticeable relapses or an increase in symptoms, then you should be having them regularly. I don't think you should be going more than 4 years without one, though.

I'm one of those people who thinks that too much emphasis is placed on MRI's by themselves, but at the same time they're a valuable tool. I'm currently going one year in between them, but I've had them as often as 3 months when I had a relapse. I'm hoping to work my way up to 3-4 years.

[twooldcrows]

welcome to our great bunch of people of all ages and years of having MS...we have lots of enjoyment on here for the jokes and funny pictures of the pets doing silly things to pictures of our hobbies and children and friends on vacation...so you should enjoy our great group of people ,we do talk about different topics about MS and affects that we have from it ..none of us are doctors but we do have great information on living with it...again welcome ...enjoy life for we are still the same person we just happen to all have MS...love and much happiness..

[Sandydemop]

Hi Welcome! there are a couple of things to know. there are 3 different MRI scans: brain, cervical spine and lumbar spine. some docs use contrast and others don't. Find out what's best for you. Also, you want to be on the best imaging possible. For instance some docs use 1.5T (for Tesla) my doc uses a 3T. they go as high as 7. best wishes. Also MRI doesn't always (or usually) reflect functional changes. Definitely have an MS Neurolgist!

[Squirrel1270 in reply to Sandydemop]

Thanks for the response. As I recall, my first MRI was with contrast. The second wasn't. I am currently seeing an MS neurologist but since I haven't had any real issues, my appointments have gone from every 2 months to 6 months and now annually and usually just comprised of checking my bloodwork for liver functions due to my meds. I usually spend more time in the waiting room waiting for my appointment than I do with my Dr. I'm considering switching over to a neuro with the VA but a bit indecisive at the moment. Trying to get to see my Dr. this month and will probably make my decision after that.

[Sandydemop in reply to Squirrel1270]

sounds good. You'll figure it out. What medication are you taking? how did you get diagnosed?

[Squirrel1270]

I've been on Tecfidera from the beginning. I was working in a warehouse where it was pretty hot and humid and I started getting double vision. I went to my eye Dr. and he didn't know what it was. He sent me to an Neuro-Ophthalmologist who said right off the bat he thought I had MS and sent me for an MRI. Results came back, I went to my neurologist who sent me for the spinal tap and the rest is history. Luckily my little green pill seems to be keeping things at bay, knock on wood...

[carolek572 CommunityAmbassador]

Welcome to the forum, Squirrel1270 ! You should ask your neurologist about the frequency of MRIs with your specific history with ‘ms’. When I was diagnosed with ‘ms’, it seemed like I was getting MRIs on an annual basis. Today, my doctor has indicated that I will be getting them if any changes occur. You can certainly look at mymsaa.org for more information on this subject. I look forward to hearing more from you, but in the meantime, keep smiling!

[Squirrel1270 in reply to carolek572]

I have an appointment with him next month and I've got a laundry list of things I'm going to ask him.

[stepsforNeeC]

Welcome to the family,. My Dr sends me into the tunnel (gotta find your sunshine through this) once a year. Now if you have a bad spell (pray those are few) and require hospitalization; you'll probably get one as an assessment. Again welcome, hope this is helpful. Blessings and Peace. NeeC

[ganna64]

Welcome! Because I'm not on any therapy for MS, my Dr. doesn't see any reason to have an MRI. I might ask for one anyway even though I am horribly claustrophhic.

[Sandydemop in reply to ganna64]

hi ganna64 do you see an MS neurologist? there are ways to handle the clostrophobia and there are also open MRIs. They're not the end all be all but sometimes good to monitor for changes.

[ganna64 in reply to Sandydemop]

Yes, I see a neurologist that specializes in MS. I've had many MRI in the past.

[Elizt3]

welcome to the group! Hopefully you’ll find it as helpful as I have over the last few years. I’ve been getting MRIs every year. Over the last three or four years, my doctor has ordered them without contrast. Apparently he says the contrast isn’t necessary (and I think there’s evidence that contrast might not be that good for us).

[Blue000]

Hi, welcome, I was also diagnosed on my 50th birthday! I have had mri’s about every 1-3 years, it depends on the doctor I have and most recently on changing medications(copaxone to aubagio). MS specialists are the way to go,

[hairbrain4]

Welcome to the group! I got my diagnosis for my 50th birthday too! Come March it will be 18 yrs since. I get an MRI every 2 to 3 years since I don't really have a lot problems or relapses. Right now it's in remission & I don't have any symptoms, 1st time since my diagnosis. My MRIs haven't shown any significant changes since the 1st one, I'm so grateful. I believe it's due to the DMT(disease modifying treatment) & prayer. I wish you all the best & hope to hear more from you!

[Squirrel1270 in reply to hairbrain4]

Wasn't exactly the 50th birthday present I was expecting... 🤔

[hairbrain4 in reply to Squirrel1270]

Me neither! I had numbness on the left side of my face & told the Dr about it, thinking he'd send me to the chiropractor but instead sent me for an MRI. I should have known that it wasn't a pinched nerve cuz I was a Cosmo instructor & I knew facial nerves are cranial nerves!

[Sandydemop in reply to hairbrain4]

congrats hairbrain4 on your continued good health

[hairbrain4 in reply to Sandydemop]

Thanks! 🤗

[Peruzzot]

Welcome to the group.

When I was first diagnosed I was getting MRIs done every 6 months. I'm only getting them done once a year now for the past 7 years.

[Squirrel1270 in reply to Peruzzot]

Yeah, I'm thinking I'm going to ask to have one done, just to make sure the little man is still holding a lit candle up there and nothings gotten any worse.

[MarkUpnorth]

After decades of M.S., I had several in earlier years the less with time. A neuro uses it to monitor progression over time. But honestly, other than the short rest / nap in the middle of a busy day, never got all that much out of them. I have RRMS, and have reached a point where I stopped having relapses. Just left with decades of accumulated "gifts" I wish I never received, and can't re-gift. However, don't believe you can't. I was told my vision losses from 7 bouts of optic neuritis were permanent. They accumulated over the years, but went away with healthy diet for many years. Balance, too has improved. Not fantastic, but good enough to wake without even a cane. Good luck. Don't fret the MRI thing. If you are told to get one, enjoy the brief rest. Not really going to make a difference except in possibly evaluating DMT effectiveness. Oh yeah, my Neuro's pulled me off DMT's after developing full time flue like symptoms. Went from a pharmacy drawer full of meds to none! Regular doc's say I'm good, no meds recommend! Eat healthy, avoid processed foods, and exercise (walk) regardless how hard. You get better.

[Sandydemop in reply to MarkUpnorth]

hey MarkUpnorth so glad for your improvements!

[hairbrain4 in reply to MarkUpnorth]

Glad you've overcome some obstacles & actually healed some!

[lbenmaor]

Welcome to our group Squirrel1270

Leslie

[Squirrel1270 in reply to lbenmaor]

Thanks Leslie

[lbenmaor in reply to Squirrel1270]

You're Welcome!

[green244]

My husband had his first symptoms at age 52 and will be 69 in February. He hasn’t had an MRI in ages for two reasons: nothing about the results would change his treatment plan and he has severe panic attacks in the machine (sort of PTSD from a really bad experience he had in one when they didn’t know what was wrong with him and put him in one while he was having a very bad reaction to the Dilantin they put him on after a syncope episode that was misdiagnosed as a seizure). Whew - long sentence! I think MRIs might be useful when you are trying to see if a treatment plan is working or if you have RRMS and you need to know the damage from the latest relapse. But, my husband has permanent progressive which presents with slow progression rather than relapses. BTW , he is on Ocrevus which seems to be slowing the progression. That being said, at this point he can no longer stand long enough to transfer (even with a support pole) and has no use of his left arm. Luckily, no mental or vision issues. Everyone seems to present differently so it’s hard to get value from comparing to the progress of others.

[Mollyabigail]

Welcome, Squirrel1270! Gosh, even in the boondocks of rural "Mississippi", (I spell it out, because the abbreviation is "MS" and things get confusing), I get an annual MRI. I am 4 years older than you, but just 2 years into this journey. Not sure if that makes a difference or not. Glad you are here, though!

[Tazmanian]

Welcome to our group. If your neurologist specializes in MS and you like him or her go by their recommendation

[Fancy59 CommunityAmbassador]

Squirre1270 it's Fancy59. 1st I would like to welcome you to our extended family. Please ask anything you want and never feel that you are asking questions that are silly because no question is silly. There is much we can learn from each other and how do we figure that out unless we ask questions.

The 1st question I have for you is your neurologist an MS specialist? You will find standards vary from neurologist to neurologist but I do believe most everyone I've ever spoken to would think 8 years is a little bit too long. Are you on any kind of DMT (Disease modifying therapy), to slow down and/or stop new lesions and the disability progression that goes along with them, It is my experience from having MS Diagnosed now for about 9 years that they do an MRI every year to make sure your DMT is doing its job.

Remember even if you think your disability is mild you are only seeing the tip of the iceberg. What's going on inside your body and brain could be much much worse. That's why MR I's are so important because they show us what is going on inside our bodies so your neurologist can form the best treatment plan for you. If you need help finding an MS neurologist contact your local National MS Society (1-800-344- 4867) and they will help. I hope this helps. Fancy59.

[Squirrel1270 in reply to Fancy59]

Morning Fancy59 and thanks for the response and advice. I’m currently on Tecfidera, or whatever the generic version is called, and have been on it from the start. It seems to be working well for me. No real flare ups. My Dr. is an MS neurologist and I’ve been with him for over 13 years, since before my MS diagnosis, dealing with migraines. He’s been the “go to guy” for a long time now. I’m just contemplating on whether I need to find someone new. I have an appointment scheduled for next month and I’ll decide after talking with him this time.

[Fancy59 CommunityAmbassador in reply to Squirrel1270]

Always remember you are the best advocate for your health! It never hurts to get a second opinion especially if you're having doubts about certain care guide lines like your MRI. Please let me know what you decide and best of luck. Take care. Always remember together we are stronger. Fancy59.

[KipAngCan]

Hi!!

I got the same 50th birthday prize. It must be becoming a thing. I’m on my second neuro and this one is an MS specialist. It’s been a little over a year since my last MRI ( for the previous neuro) but my current Dr. tells me he doesn’t routinely order MRI’s because, under normal circumstances, they don’t show enough since your spinal cord is only as big a your finger. I’m currently on my last round of Mavenclad so we’ll see if it works. My progression was pretty severe and sudden but it seems to have leveled off now. I’m extremely disabled now so do what you need to to stay mobile and able!! I do physical therapy once a week for the past 3 years but that is just helping me maintain the mobility I have. It’s interesting to see what everyone is experiencing, it helps me to feel positive about what I’m dealing with. Good luck with your journey!! Sending you positive vibes!!

[BlanketTime1]

i see others answered your question, but i wanted to say welcome!🤗

[Squirrel1270 in reply to BlanketTime1]

Thanks