Has anyone been given a diagnosis of PPMS with just one lesion?
my symptoms have been progressively worse over 3 years. right sided weakness, fine motor issues, fatigue, twitches and balance problems. I’ve had MRIs which show a brainstem lesion that hasn’t really changed in 3 years. I’ve had lumbar puncture which confirmed inflammation. Previous CIS diagnosis.
My neurologist says it sounds like I’m describing PPMS but has yet to confirm anything just sending me for more nerve conduction studies.
I’m just in a perpetual state of waiting and having more tests. I looked at the diagnostic criteria and some websites state 2 or more lesions must be detectable.
if i don’t slow this down i cant do my job.
desperate to know what I’m fighting so i can move on with my life.
It’s not just the fact there’s only one lesion. Depends on how big it is and where it is I guess.
A few differences in symptoms but similarities in the diagnostic process. I was misdiagnosed for years before getting my MS identified. Early episodes were possibly CIS, possibly trapped nerves related to lower back pain but were they Relapses? That dilemma wasted the best part of a year: was I PPMS and the early episodes unrelated? Or was I SPMS and the early stuff was RR?
Gave the MS Consultant the chance to do nothing other than “watchful waiting”. Ugh! Hate that phrase! At least the LP has confirmed it is definitely MS for you. Be careful that they don’t write you off as NEIDA: No evident inflammatory disease activity, because under UK NICE rules, they are not able to prescribe ocrelizumab.
Push them to commit. Ask for a MDT (multi-disciplinary team) meeting and ask for a Treatment Plan i.e. more than nothing. Asking for those things also tells them that you Mean Business, and won’t be fobbed off.
I had my Dx in March off this year with two lesions. I know it’s not one but it’s as close as it gets.
Had two LPs and confirmed I had demyelination. I expected to be diagnosed with MS but nearly laid an egg when I was told it’s likely PPMS.
I’m in the waiting to see camp right now.
Have an MRI that Wednesday coming and then a telephone consultation with my neurologist next month.
It’s crazy but I want new lesions to show so I can get a treatment, otherwise I’m on this journey with nothing but pamphlet after pamphlet.
GCCK’s advice is excellent advice and I only wish I had done as they suggest and dug my heels in.
Though I have to be fair and say my neurologist has been in contact advising me not to take steroids as my GP suggested.
Even the GP misunderstands MS I guess.