Testing for MS and MRI differences

[Chaucer89]

Hello folks

I’m a 34 year old female actually based in the UK but I figure this will tally across most countries. I currently being referred to neurologist for some worsening possible neurological symptoms and booked for a spine and head MRI to start ruling out MS and also any spinal compression (I have scoliosis and osteoporosis). My issue is that I was previously booked to have a 3T MRI scan but because of the metal rods in my back I’ve had to rebook onto a 1.5 but I’ve now read more and discovered that the 3T is particularly good for brain scans, more detailed, has more chance of picking up lesions, particularly in certain areas of the brain. I’m debating asking to split my MRIs and have spine done on 1.5 and then get the head on the 3T. Has anyone experienced something like this with where they’ve found the differences? Studies I’ve read are confusing as they seem to both suggest that lesions are more likely to be picked up but that it also does not improve the ability to diagnosis of MS. I don’t want to make things more complicated than necessary but I want to be sure. Unfortunately with the state the NHS is in at the moment even urgent referrals get a waiting list so it’s likely going to be a while before I can see a neurologist so this scan is going through my GP.

My symptoms including dizziness, vertigo, double vision, nausea/heaviness on standing, increased difficult walking when stop starting, muscle weakness in legs in particular (like back of legs are going to buckle), tremors, cold sensations in right leg, wet socks feeling, numbness in limbs, memory issues, concentration etc. I’ve suspected and wanted to rule out MS for years and finally talked to my GP about it who has referred me urgently so I assume she believe something is going on too, I already have an extensive medical history. I’ve been wanting this MRI for years so I really don’t want to mess this up.

TIA

[CatsandCars]

Hello and welcome! We have other members from the UK, so that's all good. I'm not an expert in MRIs, but I've never heard of anyone's diagnosis being delayed due to the wrong type of MRI machine. You may be overthinking just a tiny bit, which I can absolutely relate to! Maybe other members will disagree, though.

I hope you don't have MS, but I get that you need answers. I think a lot of us were relieved to be diagnosed, because we knew something was wrong, and it's proof that you're not imagining things. If you've suspected MS for a long time, you've probably done some research and learned that while having MS sucks, this is the best time ever to have it. There are so many treatments to help prevent relapses and slow progression now! Thirty-some years ago, there was nothing, and twenty-some years ago, everything had to be self-injected at home, where you should feel safe!

This is a great community to learn, ask questions, find people who have been/are where you are, or just to vent when you need to. I'm glad you're here. 😊

[Chaucer89 in reply to CatsandCars]

thank you! 😊

Yepp I do feel like I’m overthinking as I definitely do and most people would still be diagnosed with standard hospital MRIs so there’s no reason to think it would make a difference. This MRI machine is part of a private brain research centre which the NHS has taken to use to cut waiting times. I wish I hadn’t read up on it really but I’m annoyingly curious in life! Maybe the 3T would help with very early detection, but not make enough of a difference for full blown MS I’d guess from studies.

I’m debating phoning the department on Monday to see if I can ask what they think to reassure me. I just know how hard it is to get an head mri here, healthcare here feels like a you get one shot deal at the moment so I’m just a bit anxious them missing anything and that’s game over 🙃

[CatsandCars in reply to Chaucer89]

I am also a champion overtkinker. When there's nothing else you can really do about something scary, it's hard not to. I can understand feeling like you only get one shot, though. If calling eases your mind, I say go for it!

[CatsandCars in reply to Chaucer89]

Apologies for thinking you're new here, by the way. I hope that you get some answers soon.

[Chaucer89 in reply to CatsandCars]

New to the group, not to the site! Like I say, extensive medical history 😅 this site has been a godsend.

Thank you for your kindness, I appreciate it 😊

[CatsandCars]

I get it now, thanks.

Any time!

[bookish]

Hi, with those symptoms, please make sure that B12/folate deficiency or metabolism issue has been fully investigated, as well as the MS testing. Serum testing alone is not enough, if that is all you've had. Best wishes.

[Chaucer89 in reply to bookish]

Yup me and GP had that thought too but B12 and folate all steady and normal levels. I have regular comprehensive bloods due to my other health conditions. Only bloods out is my bilirubin but that’s well known as I have confirmed Gilbert’s.

[bookish in reply to Chaucer89]

Unfortunately you can have a cellular/functional vit B12 deficiency at any serum level, and folate may actually rise with B12 deficiency due to the folate trap. You could ask for active B12 (holotc), plus anti-parietal cell antibodies, anti-intrinsic factor antibodies, serum gastrin, methylmalonic acid and homocysteine, but all of those can be deemed normal and there still be a B12 injection responsive deficiency (I have one!). Oral supplementation may skew testing results, increase blood levels, but not repair damage for many of us. The only certain way is a therapeutic trial of injections, so don't rule it out just yet. With Gilbert's you need good levels anyway gilbertssyndrome.org.uk/b12... Cheers

[Dean0111]

hi, first of all I hope you will be fine. Have they done a spinal tap?

[Chaucer89 in reply to Dean0111]

Not yet, I’m waiting to see neurologist so early days in investigations in this. My GP ordered the scans in the mean time as knows the wait so assuming will see if neurologist thinks there is something actually going on and a spinal tap is worth doing next.

[Dean0111 in reply to Chaucer89]

Ok please keep us updated. Your symptoms could also be the result of transverse myelitis. Til I hear again from you stay strong and be well😊😊

[stepsforNeeC]

Hello and welcome! It is difficult to get what we need at times, as quickly as possible! Your detailed history of your health history should demand attention! Did you speak with an health care advocate with your insurance and coordinate with maybe your doctor’s team to expedite your MRI’s? I’m in PA , and when procedures/test need to get done a “nanosecond “ with pre certification etc., a nurse practitioner will work hard to navigate through the nonsense! Please keep us updated. Praying for your needs and feeling better soon 🙏NeeC

[Chaucer89 in reply to stepsforNeeC]

I’m in the U.K. so all under NHS thankfully, my GP put everything under urgent referrals but unfortunately there is still a wait for urgent these days, hopefully not more than a few months though. The scan came in much quicker and have that on the 10th may so that at least rules out anything majorly urgent such as any spine issues whilst I’m waiting. Thankfully I’ve got a wonderful GP so I know she’ll chase urgently if anything gets particularly worse or I’ll get sent to A&E but I’m managing at the moment so hopefully just a bit of a wait 🙂

[AquaZumbaFan in reply to Chaucer89]

My first lesions were seen in 1991 when I was a “volunteer test patient” on our hospital’s mobile mri scanner. They were testing out a new coil and found my lesions but didn’t have symptoms at that time. (It was kinda awkward as I had a crush on the mri tech who did the scan) I worked inside the hospital in CT/angio. I saw a wonderful neurologist who did a bunch of tests all negative at the time. although my mom had ms atsince before I was born… they couldn’t call it until 2001 when I had my first full blown flare up. Wishing you the best, it sounds like you have a great GP. Please let us know how you do with everything. From one serious overthinker to another 🤗

[irhunter]

My original ‘working diagnosis’ was from a 1T MRI looking for a possible spinal tumor. Our giant county with a population of just over 7000 had just setup a hand me down MRI. Within a week of that MRI I had full brain, cervical and thoracic w/wo contrast MRI completed…. Unfortunately lesions show up bright and clear. But that’s only one factor for a MS DX. My final DX was determined after completing the 2017 McDonald Criteria requirements. Plenty of positive oligodendrocytes bans on a spinal tap cemented it.

Last fall I had a 3T ride. Seems like a completely different animal! I could feel the specific areas being scanned by the warmth… lots of energy. This series of scans really didn’t show much new BUT the previous 22mm thoracic lesion had shrunk to 16mm. Neuro won’t confirm but possible remyelinization from clemastine is my hope!

Good Luck!

[Chaucer89 in reply to irhunter]

Interesting that you actually felt the warmth! I do wonder what it would have been like with all the metal in my body. They say it’s tiny differences in temperature within the metal itself but I’ve never felt the energy from an MRI before. I suppose that will always be ruled out with below neck for me anyway. Will be interesting if 1.5Ts ever become obsolete. I read more last night and now feel comfortable just going for 1.5T, as you say it’s the standard for long enough and if I was in the hospital that would be what would be used so if MS is there then it will show. I’m just anxious for answers mostly. I do also wonder if the neurologist will end up asking for another mri with contrast when I see them anyway so might be fretting for nothing! Thank you and fingers crossed your treatments working well! 🙂

[Contra21 in reply to irhunter]

Clemastine you took for ms?

[irhunter in reply to Contra21]

Absolutely. In the ReBuild Clinical Trial it showed a robust response for remyelinization of damaged axons. It wasn’t a big enough number (.yet!) for FDA approval so it’s off label. My Neuro wouldn’t prescribe it (off label liability) but told me to ask my GP. He prescribed it for my allergies.

Coincidentally, I asked my Neuro if she had MS would she be taking Clemastine. She replied yes along with metafornin(sp?) which is shown promise of increasing the Clemastie effect. Www.clinicaltrials.gov. Search keywords for trials. I don’t have diabetes so even my GP won’t prescribe it.

[Contra21 in reply to irhunter]

I want to try. Do I have to look for that intelligent as I looked to buy and can't see that ingredient. I'm in Australia

[irhunter in reply to Contra21]

oops… second half of reply…. Clemastine has been shown under lab conditions to incite the OPC cells to mature and produce myelin sheaths on exposed axons.

[bookish in reply to irhunter]

Interesting, but metformin can deplete B12, and B12 is also needed for myelin. Why Clemastine and not B12, or is it additional ? pubmed.ncbi.nlm.nih.gov/158...

[irhunter in reply to bookish]

I honestly don’t know the answer to either question. I did press my Neuro on vitamins or supplements to nurture oligodendrocyte precursor cells (OPC). She replied the 2000mg daily fish oil that I take was good enough.

[bookish in reply to irhunter]

I should say that I don't have MS, just an interest and a concern, partly due to a misdiagnosed friend (had B12 deficiency, not MS and took a few years to sort it out by which time some damage was permanent), and partly due to knowing from the forums and societies that this confusion/co-occurrence is actually quite common. I am the 5th of 6 known generations with B12 metabolism issues, so I've learned quite a bit about B12, the huge variation in symptoms and the different presentations even in the same family. From my experience, GPs and neuros generally are not trained to know enough about vitamins, minerals or supplements to offer an opinion, or feel comfortable doing so. Although I am not suggesting this site as a reliable source (I don't know it well enough), he does give references, which is a start. There are a few things that might be worth some personal research, if they chime with you or family history - thyroid for example. Also choline, vit D, B vits etc and interestingly in view of the Clemastine, flavonoid Quercetin - which I've been using daily as a mast cell stabiliser/anti-histamine for a few years (and didn't previously know that it might be assisting with my myelin). optimallivingdynamics.com/b... . Best wishes

[Frances_B in reply to bookish]

And what happened to your friend is exactly why B12 is meant to be one of the standard blood tests done as part of the diagnostic workup for MS, but it's amazing when you ask the question, how few people report it actually being done. I was one of them and fortunately when I found out that the neuro had not included it in the tests he requested my GP agreed to have proper B12 testing done, with homocysteine tested etc. My B12 was a bit low but not too bad, but I'd been told by the neuro I had MS and had been prescribed one of the drugs available at that time - but what if it had been a B12 deficiency instead which wasn't picked up because he didn't do the right tests??? I could have been one of those people with irreversible neurological damage which could have been prevented.

It's a worry because the statistics are that possibly up to 20% of people who are diagnosed with MS turn out to not have MS - and while it is difficult for people who want to know what is going on in their bodies it's far better to be properly diagnosed that have it stuffed up and given expensive meds with nasty side effects for a disease you don't have.

cedars-sinai.org/blog/getti...

[bookish in reply to Frances_B]

So true. And B12 (and thyroid) are supposed to be checked for other conditions, dementia included, and often aren't. Even for heart issues, both are essential. How low was your 'a bit low' and are you being treated? Ideally you would want to be mid-range or higher (not above range unless supplementing), but even then you could have a treatable deficiency.

[AquaZumbaFan in reply to irhunter]

I feel the warmth as well, I have had more MRIs in the last 6 years brain, total spine and MRCPS than I have in my entire MS career

[NanciG]

I was diagnosed with an MRI in 1993. The 3T didn't become available until 2000, so I wouldn't fret too much about the machine. Wishing you the very best possible outcome for your testing and diagnosis.

[Chaucer89 in reply to NanciG]

Yup I read more last night and happier that the 1.5T is perfectly good to see what it needs to if it’s there. Overthinking in the desire for answers! Thank you 🙂

[sashaming1]

I hope that you will get the best MRI that will work for your body's issues. I remove my belt (and metal buckle) when I get a MRI so it won't interfere with the MRI FYI.

[Chaucer89 in reply to sashaming1]

Yup no metal on clothing at all, they seem to be much more careful these days as the machines get stronger, even asking if you’ve ever worked welding. Better to plan ahead with outfit than have to wear a hospital gown, the room is always freezing.

[CatsandCars in reply to sashaming1]

It's actually nice that you only have to take off your belt. At the place I go to, if I wore leggings with no metal, I would only have to take off my underwire bra. Now they are under new management and the only thing I can keep on is my undies and my socks. They make patients wear these scrub pants and a hospital gown. The tech gives me a second gown to put on backwards so it's not as chilly. I suppose in the grand scheme of things, it doesn't matter much, I just find it annoying after all these years and all the MRIs I've had. I guess there are now fabrics with metal in them. Plus they make us come in with no hair products and no makeup, so I have to wash my hair just to get an MRI (and I wear makeup for a reason).I know there had to have been a problem at some point or they wouldn't have those rules, but it really seems like overkill.

[Irishgirl76]

Brain MRI is key and spine. Try to find a MS SPECIALIST and important to understand lesions on brai and spine. Be patient and have a specialist explain reports. Opinion maybe 2. Get MRI ‘S** Stay up on facts and opinion and new research. Your body tells you much. Record and be patient and try to treat yourself w/ good 😊 energy. ☮️