Hi I was at the rheumatologist and she had a copy of my MRI report that I had 2 weeks earlier (I was there on a non MS related matter) She read out that I had no lesions in the brain but lesions from the back of the neck down to the base of the spine She said there were many many lesions (she did read them out C1 C2 and so on and so on all the way down ) I’m still walking around although wobbly at the moment do the amount of lesions correspond to the amount of disability or is it irrelevant Thanks Jane
Crikey, that’s a bit of a shocker for you. I am sorry that you have had this worrying news. I don’t know very much about lesions so don’t have anything to offer, but I hope that you can get some clarity soon about what is going on in there.
I’m not sure exactly how lesions correspond with disability but I would take anything with a pinch of salt unless reported to you by your neurologist. Maybe make a note to ask about it at your next neuro appointment or you could even ask your ms nurse if you have one, but until then I’d try not to worry as it sounds like overall you’re doing well xx
Not irrelevant but not determinstic. It is all too easy to get fixated about MRIs, but MS was around long before MRI was invented. It helps with a diagnosis, but I am not sure if helps determine any treatments other than proving ongoing activity.
The location of damage relates to where disability MAY be found, but brain lesions and spinal lesions may cause similar symptoms.
In other words can be interesting but of little or no practical value to the patient (other than to cause anxiety).
Hi, I too have lesions on my spine only ie cervical and thoracic. My neuro said it is rare, not to have brain lesions.
I dont have many and they hid from the camera well. It took 22 years to get a diagnosis.
I have been paraplegic and a full time wheelchair user for 20 years.
There’s nothing to determine what lesions will cause what level of disability in this game!
Boudsx
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Thank you for the reply I have only seen the Neurologist once just before xmas waited 6mths to see him ( I had a previous diagnosis of MS 20 yrs ago with positive MRI and lumbar puncture) but hadn’t seen anyone since (long story) He as good as kicked me out of the door said the MRI that I had of my head a few months earlier for a stroke showed absolutely no sign of MS Multiple white matter lesions only which were vascular and not related to MS in any way Also felt it was unlikely I had Trigeminal neuralgia (which is why I went to see him) as my symptoms were Atypical I left without even a date for a follow up appointment My Rheumatologist decided to order MRI of brain with and without contrast Trigeminal nerve with and with out contrast and spine with and without contrast She said she wasn’t a Neurologist so wouldn’t be able to give me detailed answers However see said she had spoken to Neuroradiology direct who had told her it was pretty extreme and said I needed an urgent Neurology appointment There was also a vascular loop compressing the trigeminal nerve Interestingly when I had first had my stroke I was told I hadn’t had one and my MRI was reassuringly normal Only to receive an appointment for the stroke clinic 3 mths later where I was told I had suffered an ischaemic stroke and had left upper quadrantanopia (loss of quarter eyesight )
My understanding is that a tiny lesion in the wrong place can be far more damaging than larger ones elsewhere. Personally, I find what I can, and can’t do, to be a better guide.
The spine map gives an indication of where to expect damage.
Human Spine and Spinal Cord Picture C1 - S5 Vertebra | Disabled World (disabled-world.com)
Mully, it sounds as though you have not had the best of experiences with neurologists. At least your rheumatologist seems to be on the ball.
Hi thanks I will have a look at that I have lesions on C2 C3 C5 T6 T8 T10 T11 T12
Minefeld!Dunno what they’re playing at!
Boudsx
Depends on the area on the nerve strand effected . I currently have a long single area stretching from medulla at base of brain to C5. It has taken our my sensory functions on left hand side from neck down, can’t feel pain or heat and cold. My strength seems unaffected and my ballance etc is good but I am having to self catheterise. I find it strangely fascinating how complex it all is.
Don’t worry about the details of the lesions it’s more about listening to your body I think and never giving up.
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