@Si2020 

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Si2020

Going through PPMS diagnosis

Hi all, I have literally just signed up as I am currently going through a possible diagnosis for PPMS - my neurologist has more or less told me it is MS but wants a lumbar puncture to be 100%. At this stage I would be shocked if it wasn’t MS as looking back symptoms have been with me for years. Hate being in limbo however & waiting for confirmation & COVID isn’t helping matters! I know I am not the only one & there are others here also going through the same but it is a pretty lonely place to be honest. Anyway, rant over 😊 Nice to meet you all Si
@Vixen

Hi @Si2020, yes being in limbo is the worst thing for sure. So I guess you've had an MRI and yes, the lumbar puncture is usually the final yay or nay. I am no expert, but I think that a diagnosis of MS might not confirm that it's PPMS which sometimes may take a little longer. Your neuro will be the expert on this though. This journey is indeed a lonely one, but at least you know you have virtual company here and that we all have been where you are now. People here will be great for answering any of your questions too.... :-)

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@Si2020

Hi @Vixen, appreciate your reply Yes I have had 2 MRIs, 1st showed inflammatory demyelination on brain with a heavy lesion load on my spine, 2nd was of no change. I have read the letter my neurologist issued to me for follow up a million times, I can’t get it out of my head🤦🏼‍♂️He comments that this ‘almost certainly represents MS at a primary progressive stage’ LP just to confirm. My head is wrecked but what can I do?