MRI Day: Morning Crew, Today is head MRI... - My MSAA Community

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MRI Day

Squirrel1270 profile image
26 Replies

Morning Crew,

Today is head MRI day. An afternoon in the "Tube of Terror"... 😄 First one I've had in 5 years because I complained to my neuro that I'm having more issues with my cog, balance and bouts of double double vision in the morning. Just curious, when I get my head examined, should I be getting my spine MRI'd as well? I saw a new primary the other day and she asked me about it and I'd said I have never had a spinal MRI. Just wondering if I should start complaining to my neuro about this. Hope you all have a great Friday!!

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Squirrel1270 profile image
Squirrel1270
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26 Replies
Elizt3 profile image
Elizt3

good luck. Hopefully the tube will be larger than what you remember. For me, it’s gotten a bit larger and I appreciate that. Can they put a mirror on the head cage so you can see out the tube? I find that to be helpful.

I have had brain MRIs every year or two for 27 years. During that time, I’ve had a few cervical spine images and maybe once of thoracic spine as well.

Squirrel1270 profile image
Squirrel1270 in reply to Elizt3

It's not that bad in the tube. I usually fall asleep during the proceedure. I had a tumor removed from my foot and had to have it MRI'd every 6 months to make sure it didn't come back so the tube and I are good friends...

BlueBird6557 profile image
BlueBird6557 in reply to Elizt3

I had mine last week after several years. They are always long but it wasn’t too bad. I stress with the noise bad though. Good luck with yours.

starlight5 profile image
starlight5

Is there a reason it's been 5 years since your last mri? I am 59 and have them yearly, neuro just suggested starting a 2 year interval.

I'm surprised you have never had a cervical mri? That is where my first lesions were discovered. I started with brain and cervical mris, then thoracic was added. Most of my lesions are cervical and thoracic, with less brain lesions.

Sounds like you need to start advocating more for yourself, especially as you are noticing more or increased symptoms. It may not be to late to call your neuro and have it added for today, or if you tell the mri techs you thought you were having a cervical also, they may be able to call and get a quick authorization/confirmation.

I always request a washcloth be placed over my eyes so I can open them but not see the cage. A little valium never hurts either! I tend to doze off too

Check out Dr Aaron Boster on YouTube, calling out neuros with what he calls therapeutic inertia, lots of great info.

Squirrel1270 profile image
Squirrel1270 in reply to starlight5

Yeah, I'm not sure why I haven't had more frequent MRI's either. I'm definitely going to ask about cervical though and start spending more time in my actual appointment than I do in the waiting room... When I had mentioned that I was having other issues, he looked a bit puzzeled and said he wondered if it might be time to change up my meds. I've been on Tecfidera since being diagnosed almonst 9 years ago.

I"ve watched Dr. Boster's videos quite a bit and have learned a lot from him. Would be nice if all neuros were as passionate about patient care as he seems to be.

NorasMom profile image
NorasMom

Please find a new neuro ASAP!

red flag
Squirrel1270 profile image
Squirrel1270 in reply to NorasMom

Actually, I talked to my new primary about if I should get a new neuro or not and she recommended I stay with the one I got, just get more engaged. If I get no joy the next time I see him after my MRI, I'm going to change. Thanks!

NorasMom profile image
NorasMom in reply to Squirrel1270

I just have so many concerns about the lack of follow-up from this guy. My admittedly-uneducated opinion is that you should have had MRI's at the 1- and 2-year anniversary of your diagnosis, at the very least. Then, if there were no changes, maybe wait 2-3 years before the next one. Being on a DMT complicates things even more, because how does he know if it's actually working for you? This guy might be a terrific neuro, but I don't think he knows much about MS. Your neuro should be guiding you, not the other way around.

Anyway, I hope today goes well for you!

Squirrel1270 profile image
Squirrel1270 in reply to NorasMom

I see where you're coming from and I do agree. Like I said, I'm giving him until my next visit to step up his game. If I'm not satisfied, I'm outta there!

starlight5 profile image
starlight5 in reply to Squirrel1270

I missed if you said he is a general neuro or if he specializes in MS?

Squirrel1270 profile image
Squirrel1270 in reply to starlight5

He is supposed to be an MS specialist.

starlight5 profile image
starlight5 in reply to NorasMom

I agree with the red flag!

lbenmaor profile image
lbenmaor

I understand why you're worried. You will be fine!

Leslie

Cwright170994 profile image
Cwright170994

That's a lot of laziness on his part if he's sent for your just your head to be MRI'd! 😡 When you get to the building, ask the doctors if it's going to include more than just your head. If not, the neuro will be in a lot of trouble for just ordering an MRI of a "small" part of your nervous system, and the radiologists will definitely kick up a fuss about him.

Squirrel1270 profile image
Squirrel1270 in reply to Cwright170994

I did mention the fact that I’d never had any other part of y nervous system MRI’ed and the tech just said that it was strange and went about her business of setting everything up.

sashaming1 profile image
sashaming1

From what I know about MS, and I have ms, they do the head if that's where the lesions are and the spine if that's where the lesions are. I'm guessing that they would do the spine MRI if I'm having arm or leg issues.

Squirrel1270 profile image
Squirrel1270 in reply to sashaming1

I do have a numb leg that gives me problems but they chalked that up to me probably just damaging my nerve or something. I really don’t put much faith in our healthcare anymore.

mrsmike9 profile image
mrsmike9

I have an MRI every fall. Generally it's of my head and neck. I don't know if I've ever had my full spine done. I've wondered if lesions can be down in the spine without ones in your neck first?

NorasMom profile image
NorasMom in reply to mrsmike9

I think so, but don't quote me on that. I also ignore whatever they say about the lesion location, because I've always had extensive leg troubles, with arm issues developing over the last 5 years, and all of my lesions are just in my head.

mrsmike9 profile image
mrsmike9 in reply to NorasMom

I have arm issues but I also have a piece of vertebrae that's tipped and squishing into my spinal column. The surgeon I saw asked if I have tingling in my arms. I told him, yes, but then I have MS so tingling to me is normal!

Squirrel1270 profile image
Squirrel1270 in reply to mrsmike9

I’m with you as far as wondering how far down the lesions have gone. At least once, just so I know… next appointment I’m going in guns blazing 😁.

msstarfish profile image
msstarfish

I get the whole system done - brain, neck and spine with and without contrast about every two years. Next appointment is Wednesday.

Squirrel1270 profile image
Squirrel1270 in reply to msstarfish

Good luck!

msstarfish profile image
msstarfish in reply to Squirrel1270

Thanks!

Tazmanian profile image
Tazmanian

I get my head and spine done just not at the same time, they won't do that much at the same time I have to go on different days

ahrogers profile image
ahrogers

I get brain, cervical and thoracic spine when I get them but that is only every 2-3 years since they have been stable. I think they did all 3 when being diagnosed based on my symptoms and neuro exam. I had lesions in all 3 at diagnosis which is why I get them all now. I have only gotten new lesions in the brain and cervical cord within the first year but none since. I don't think they really take the time to look for more in the brain since I have so many.Good luck!

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