Can the Neuro read the MRI wrong

New diagnosis and before diagnosis
1

Hi all

i have not been on this forum for some time, i am still in the land of Limbo no diagnosis

The Neuro at 1st appointment advised tat i have neurological symptoms but no findings , i have had a Brain MRI with no contrast back in Feb 2019 which was t say the very least traumatic after the Radiographer told me to stay in the machine whilst she found a neurologist to look at my scan and left me in there for 7 minute s only to tell me that i can now go home ,

the Scan came back clear but the Neuro wanted to see me again in 8 months so here i am i have an appointment on the 24th Oct ,

since the last appointment i have had vertigo and feel light headed most days , i have what feels like toothache in my right leg and a clicking right jaw, i also have issues on a night where my ears feel really full and itchy (don’t know if this is any thing to do with what is going on )

my hands continue to be numb on a morning and i some times struggle to use my right arm in the middles of the night it still has feeling but wont move then and then it comes back to life a gain

i get fatuge usually at about 2pm my whole body aches

and on a night (nearly every night ) i wake to the back of my ribs in spasm which again goes away once i get up light an ironing board and stretch it out and i am still dragging my self to the Gym to go on the bike and do the stretches.

my question is : can the Neuro read my MRI wrong,

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Hello

To have your MRI read wrongly is very unlikely.

It is usually reported on by the radiographer, then looked at by the neurologist. I can’t see that two people whose jobs rely on their being able to read an MRI scan would both get it wrong.

You were unlucky to have the experience of waiting for a neurologist to come and look at the scan while you were in the machine. That has never happened to me and I’ve had many MRIs in my 23 years with MS. So I can imagine that happening makes you fear the worst, but it’s not necessarily warranted. It’s a shame no one thought to explain to you exactly the reasons for this at the time.

When you see the neurologist in a few weeks time, you should perhaps ask him/her these exact questions, ie what was the reason for the problem in the MRI, and is there a possibility that the scan was incorrectly interpreted?

When you do have your appointment, make sure you have a list of the symptoms you’ve experienced together with rough dates and lengths of time symptoms have lasted. Assuming the neurologist says categorically that it’s not MS, ask what else it could be. However, s/he may ask for a further MRI scan to be sure. If so, ask that it be a brain and cervical spine and to be done with ‘contrast dye’. This would highlight any areas of inflammation and show more detail.

Best of luck.

Sue

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Thanks Sue I dare not ask the neurologist as the last time I went in ready to tell him what had been my issues he didn’t give me Time to breath he just popped me on The bed did a 4 minute exam and then said he was sending me for an mri but didn’t think It was Neurological. I didn’t have time to process what had happened until I left the room It actually took him longer to Fill In The mri referral questions than the whole appointment I need to Grow a Back bone Sue, but at the minute I feel like a pain and a mood Hoover (sucking the mood out of the room) as I am normally the life and soul, Thanks for your advice I Will definitely get my( friend) to ask for brain and spine mri

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Hi Gilliano

Yes, get some assertive backbone.

A doctor is just a person. Ok, someone who knows more than you about certain things. But you will only get the answers you need and deserve if you ask for them.

If you have someone with you at the appointment, make sure they know what questions you want/need answering. If you find yourself being ushered out the door without the answers, if you can’t say ‘No, stop, I need to know … XYZ’. ‘Plus, I need you to do ABC tests.’ ‘I need answers!’ Make sure your companion can say those things.

It’s not being aggressive, it’s not argumentative, all you want is to know what’s wrong.

Sue

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Thanks Sue Yes your right and it’s silly because if it was any one else I would be telling them off for not asking lol I’v had a really shitty day today I came home From work and felt like iv had my energy sucked out of me, I laid on the sofa on my left side and closed my eyes then my right upper leg/groin and stomach started to Tingle then Went completely numb and my.my Right leg felt like lead, I then started to Feel Really dizzy and my Eyes kept squinting, I eventually got up and felt really light headed after about 20 mins the feeling started To come back but I Feel Like I have been on a trippy ride That has not happened to me before, but I have wrote it down so I can tell the Dr Thanks again Sue

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Hi, well years back when i too was going through this nightmare treadmill of what is it, and feeling like poop, I had another MRI. The neurologist saw me after privately. I paid to see him. I find paying you seem to get treated differently lol.

He said there was a bright orb/spot on my MRI in the spine, but the radiologist decided to dismiss it as an ARC on the film. However, my neurolgoist said to me, he DISAGREED with the radiologist and felt that it was clearly a lesion and in the place you would expect to see one for MS.

That was my last MRI. I did in 2015 october have another VEP test (first one positive bilaterally). I never heard anything went through another christmas not knowing. Then suddenly in February we lost our beloved mother and a week later I had a letter of my neurologist asking to see me. I wasnt sure what was going on as at the time i was just in shock.

I saw him anyway and he told me i can now give you a diagnosis of progressive MS as your VEP test came back positive again. He apologised for the delay in telling me, but the results were misfiled.

When i paid for my medical notes way back when it cost me 50.00 I had been told several times there wasnt nothing REMARKABLE on the MRIS, 3 letters clearly stated that lesion had been found, one even was written with, WELL SURPRISE, unsurprised, there is clearly a lesion seen on…(I think it was my T3 cant really remember). Over the letters I actually found mentioned THREE lesions all in different places, i was not best pleased, and i told my neuro that on my last visit when he told me the news. He said at the time, there were things that did not always match up but having the positive VEP again he could confdientally tell me i had ms, something to do with some criteria…

So i had POSITIVE VEP 2008 bilaterally, a ton of stuff in between, then 2015 the last VEP was also positive

anyway the bright spot seen was disputed by my neurologist as they can vetoe the radiologist i believe.

keep going i did and i got my answers. you sound a bit like me when i had my symptoms. 2pm I was wiped. If it is PPMS it can affect you so differently then if if is RRMS, even my neuro agreed they were poles apart from each other.

I must admit going private several times I think got me the answers in the end.

Hope you get yours. but never give up. I said to myself if it is MS then it will show itself and it did eventually. xx

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Hi crazy chick Thank. You so much for sharing your experience, I am very happy. Go lucky and take every day. As. It. Comes, I hope. It’s. Not. Neurological and maybe. I will wake up. One day and. Be back to being livley and normal lol All this crap has been going. On for ages, Whe it. 1st.all started. About 3urs. Ago. I went to the grs as. I. Thought I. Had a trapped. Nerve in my. Back as my. Foot. going numb so went and had lumber Mri which came back clear Then. Months later my. Right calf. Wa. So tight and felt. Hot. When it. Was cold. To touch I thought I had. A. Dvt. Or. Something so. Again goes. To. See. The gp. Get an xray. On leg. An mild atheritis, then my. Hands were. Going numb and I thought carpel tunnel so had. Physio but didn’t help had. Nerve condition test which showed nerve damage. But not. From. CTS so then had a neck mri to. See. If I have trapped nerve but. No trapped nerve so. Had physical test. From. Hand. And wrist. Specialist who. Said I have brisk reflexes Then referred to neurology I still Wake Up Like Am iron board with the back of ribs in spasm, I’v had. Vertigo. For about 3 weeks which has totally done. Me. In There. Are. To. Many things to mention But I just want an answer what. Is going on so I can help my. Self, I do believe that the gym I drag my self To in a. Morning is my Saving grace as it helps. With stretches and boose. My mood, not that I am sad. Or. Stressed. I just think I’m. Handed the card I’m gives. So just have to deal with it xx I also. Have Adhd Hypermobility Artherist. Asthma Well ay Leaset I can still Laugh ha ha ha

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Yes laughter is a good medicine. LP means nothing if it is negative. You need a spinal MRI all my lesions were on my spine.

I hope you do get answers it can take time, but like i say if it is MS it will rear its ugly head suddenly. there are other things with very similar symptoms, even Lymes.

Hypermobility can be a drag too.

stiffness can be helped with meds i think they use baclofen for that. Maybe if you were put on it at least you wont wake up like an ironing board lol. xx

KEEP SMILING. xxxxxxxxxxxx

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Hi crazy chick I have had more blood test over the past few year to rule out deficiencies, and hormones change also full lfts and muskuleskel therapist sent me for test to see if I had any infections in my bones etc All clear. I suppose it’s the process of eliminations, X