hi again - just wondering can I definitely be assured it’s still not MS - had 2 ok brain and spine MRI and clear LP previously, basically it appears my ME is gradually worsening and is “mimicking” MS - what’s happened now is that I’ve developed some weakness in my right arm and GP has referred me for a 3rd brain and spine MRI next month to check for “changes” since last one.
(I’m not worrying about MS as such as my neuro made it clear some of his ME patients are worse than some of his MS patients and my symptoms are what they are regardless of the name given to the actual illness?)
But assuming I can still safely discount MS (or can I?) - what changes would GP be looking for in the upcoming MRI- they were checking for lesions before so I thought that can be ruled out now- or can it? I’m not anxious as such, more confused!
Anyone have any thoughts? Thanks for reading this as always!
I’m in exactly the same boat at yours. I’ve had 3 mri’s of brain and spine, one with contrast, all were ok. Lumbar puncture was normal and visual evoked potential was normal. I don’t know what to believe any more and every neurologist takes a different approach to clear results. My neurologist seems to think negative results are very final. I’ve got one last check up appointment with him in December and I’m literally going to have to get down on my hands and knees and beg for another mri. It seems to me that MS can never be ruled out because it’s one of those conditions that can be slow and insidious. I’m sure people have clear results for many years. But I will be asking my neurologist if he refuses another mri due to ongoing symptoms, whether his refusal means I absolutely DONOT have it. I don’t know how he can’t refuse otherwise.
What the neurologists use to diagnose MS is your history plus physical examination, but the clinical evidence they use is based on the McDonald Criteria. Have a look at McDonald criteria | MS Trust
‘The key requirement for a diagnosis of MS is evidence of damage to the central nervous system that is disseminated in time and space. This means showing that damage has occurred at different dates (DIT) and to different parts (DIS) of the central nervous system. This distinguishes MS from other neurological conditions.’
So they rely quite extensively on MRIs and LP results to make their diagnosis. If you have no brain or spinal lesions, and a negative LP, then they can’t show damage to the CNS that is disseminated in time and space, thus it’s not MS.
And obviously there are people with ME, or FND, or other diagnoses, that look a lot like MS and have symptoms or disabilities as bad or worse than many people with MS.
I suspect that if you have symptoms that resemble MS, but have no evidence on MRI, LP or VEP, then actually MS can be definitely ruled out. That doesn’t mean that you don’t have symptoms, or another diagnosis.