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Anyone diagnosed with ms without lesions on the brain?

Hi, so my MRI results didn’t come back as planned! Seems they only scanned my head & not my spine too as ordered! However, my brain is clear of any abnormalities, which is great But my neuro said it hadn’t completely ruled out ms… Has anyone else been diagnosed without having lesions on the brain & only on the spine? They’ve told me they’re suspecting all my symptoms to stem from my spine fr my physical exam. My neuro was pretty stunned that they didn’t scan my neck as requested as she wants to get me on steroids asap to bring down any inflammation. Now I have to have another one, deep joy!

Hello Mrs C,

That’s good news that you are to have another MRI, hope this time it’s head, neck and spine. My MS stems from my spine. Hope this helps. Wish you good luck and please let us know the results.

Janet

x

Thanks Janet, what symptoms do you/did you have upon diagnosis & how long did diagnosis take? If you don’t mind me asking of course? Mrs C x

Hi MrsC,

I have a 99% diagnosis of RRMS and just one very large lesion on my cervical spine. They did find a couple of white spots on my brain, but I was told they were because I suffer with migraines and that my brain just looked old for my age, whatever that is suposed to mean! I was only supposed to have a head MRI, but my lesion was so high, it showed on the scan, so they continued and scanned my spine. I also had a lumbar puncture and tested positive for oligoclonal bands. I am still waiting of another test result to come back, which is why I have a 99% diagnosis.

Fizzy x

Hi fizzy, Thanks for the advice, i hope you’re coping well, did it take long for your diagnosis & was the lumbar puncture performed because of the lesion found or previously booked anyway? Mrs C x

Just noticed your question to Janet… my symptoms were loss of sensation down my left side, which started in my fingertips and over a period of 2 weeks, spread up my arm and down the the entire left side of my body. I could have drawn a straight line down my body where sensation changed. After another week, I started with pins and needles down my right side and vibration feelings from the waist down and in both legs. Also experienced Lhermitte’s sign when I bent my neck, the sensation went down my spine to my feet and would also travel down my arms if I was holding them up, for example when I was washing my hair in the shower. I periodically have pain in my neck, but not sure if that’s because I am trying to stop myself from bending it and getting the electrical sensations!

I was very lucky that I had my MRI, got the results and had a lumbar puncture all in the same day (on NHS) and received a diagnosis in 6 weeks, this is definitely not the norm from what I have read though.

Fizzy x

Hi again…seem to be cross posting!

My lumbar puncture was performed after the lesion was found, it wasn’t previously booked. After the LP, I started on a high dose of steroids for 5 days, which didn’t work quickly like I was told they would. I feel I did benefit from them, but improvements were slow. I am 100 times better than I was, but still have loss of sensation in my arm and the neuropathic painkillers don’t seem to agree with me! I can tell the difference between hot and cold now, but wet and dry is tricky!

Hope this helps

Fizzy x

Oh my! That’s me all over! Well not literally, it started from my neck causing shooting pains in left arm then numbness/dead arm feeling & tingly then my left toes went numb, then it started creeping into my entire leg! I have no reflexes in my feet & sensation very decreased on my left side, hard to feel the difference in water temperature, now it’s in both legs, jelly legs feeling, when I too wash my hair I can’t stand for long as my legs just shake & go so weak so I have to kneel & my arms too if I lean on them they feel like they’re trembling from the inside. Your diagnosis was pretty quick for sure! Not bad going for the NHS huh! It took me 5 weeks just to get a doctor to eventually examine me instead of just telling me “we’re not made up like that!” To have the same symptoms in arm & leg! What did he know!!! My hospital appointments have come in thick & fast since week 6 of symptoms to which worsened by this point & my neuro was shocked I had gone so long without anyone listening to me! Finally found someone who believes in me Mrs C x

I once read that anything up to 20-25% of people with MS only have lesions on their spine. Not sure how up to date that figure is these days as MRI is improving all the time, but it’s a pretty big proportion considering the brain is such a large chunk of the central nervous system.

I hope the second MRI clears things up for you!

Karen x

Hi, I was diagnosed with clear brain scan in June. Symptoms were loss of feeling and use in left side spreading from toes to head over couple of weeks. Spinal Mri showed lesions and failed VEP which supported earlier bout of optic neuritis the previous year which I put down to a virus. Complete shock as all done in 8 weeks from GP to diagnosis. I have just had repeat brain MRI to start rebif and it showed 1 lesion but hopefully now on right road to stopping any more. Good luck. X

Hi,

Im a bit confused about the spine MRI’s, does a cervical MRI scan the whole of the spine or just the neck area? And is it possible for the lesions to be anywhere on the spine?

Thaniks

Em xx

Am I right in thinking that PPMSers are more likely to have spinal lesions than otherwise? Or is that totally wrong? Teresa xx

I had lesion in C5 and T7 which I think is neck and lower back. Just checked my letter to be sure!! Not sure about the PPMS but I wold be interested to hear. I was diagnosed RRMS. X

I think PPMSers have less inflammation and less lesions but I don’t know anything about where they usually are x

Hello Mrs C,

I had many relapses over a period of 30 years without anyone knowing that it was MS. I had been in and out of hospital on many occasions but it was never picked up on. I suffered with O/N, glaucoma, iritis, cataracts uvitis and Moorfields put on one of their letters ?MS but still it wasn’t picked up. My left leg went totally numb, that was one of my hospital stays. It wasn’t until my rheumy noticed my myoclonic jerks and referred me to neuro that I was given a MRI of head, which showed I had lots of little blood clots on my brain, I now

take warfarin or I could have a stroke. She then ordered head, neck and spine MRI, EEG, VEP and other tests and dx me with SPMS. She also added that there was no need for LP as it wouldn’t show what she needed. So to cut a long story shorter I’ve had MS for over 30 years without realising and in many ways I’m really pleased I didn’t know. Hope this helps. Janet x

Hi all, Well this evening my neuro called me to explain she’d looked over my “head” scan & was happy with the amount of neck she could see & no inflammation so said this ruled out ms… Further, she said I’m sorry I can’t tell you what is wrong with you. She is sending me for a nerve test which she said will take several weeks. I really don’t know what to think now! Could she have seen Enough to tell…?! Even more confused now!

Oh & that there is nothing she can prescribe me to help with the tingliness & shaky/jelly leg feeling & fatigue, anyone know of anything that’s helped them? I don’t know how I’m going to explain this to my manager without sounding a complete prat & like I’ve made it all up!

Do not fear!
I was Dxed on the basis of an MRI and a Lumbar Puncture - and the MRI showed inflammation lesions in the T4-T6 area.

It was a later MRI which picked up a couple of very small points which could be lesions in the brain.

So, to answer your question: Yes, the spine is enough for a Dx.
It is probable that the next MRI will find the inflammation.
If your Neuro is already talking of steroids, it sounds like she is pretty sure, but just wants confirmation.

Geoff

Hi Geoff, did you read my most recent posts from last night? Mrs C

Hi MrsC, I have a clear MRI and one lesion on spinal cord. My neuro said it was not MS because of clear brain MRI. He said that some people are diagnosed with MS with a clear brain scan. He said that he has seen several of these types of people and removed the MS diagnosis! For example he said that trauma to the spine such as whiplash when you were 30 could start to cause problems with your spinal cord as you age. He also told me he had a patient who had tried to commit suicide by hanging who was now experiencing thinning of his cord in his 40’s. He had initially been diagnosed with MS. My trauma he said came from radiation damage from treatment I had in 1992! Anyway I decided to get second opinion. anyway the new neuro strongly predicts MS. A new scan was given (no new lesions). He then decided to do a LP and if that was positive he would diagnose MS. Anyway it came back negative. Oh yes my neuro stated that it is believed that 5% of people diagnosed with MS dont have it. He reckons that 99.99% of these people will have a clear brain MRI.

Regards

Moyna