@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

@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

@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?

Vixen

@Vixen

Hi again @Si2020, yes it's impossible to convey how facing this will make you feel, especially if it's 'out of the blue'. There are some basic, but important 'golden rules' you could think about. First, don't start Googling; stick to official sites like this, MS Society or MS Trust. Make sure you live as balanced a life as possible; diet and sleep, not over-doing exercise. Also, and this is a strange one, stress can have a real impact on us, affecting us in ways you don't realise. So you have to try and keep it under control. You will want to know how this thing progresses and how you will be affected and the tough thing is, that this is impossible. Every single person and pathway is different. Is your next appointment by phone, or in person? It would be good to have someone with you who can write stuff down, or else get permission to record the conversation as you will miss/forget stuff. Do you/are you able to work at the moment? Those are the basics. For now, allow yourself to feel what you feel and be very kind to yourself. You will feel very anxious, but the tough thing is that no one can tell you how this thing will progress, as every person and every case is very different. BUT, the great thing is that the world of research with MS has really advanced in the last decade. Previously there were only Disease Modifying Drugs for folks with RRMS. But in the last two years only, DMDs for PPMS and SPMS have been patented. There ae very encouraging trials currently for medications believed to promote remyelination, so that's very encouraging. I don't want to overwhelm you, so I'll stop there. You have lots of support here, and lots of understanding of what you're going through. So, stay strong, try to focus on taking one day at a time at the moment and keep your head up. This period of uncertainty will pass, I promise x

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watsoncraig

@watsoncraig

Hi 👋, as a PPMSr I feel you.sounds weird but a final diagnosis is a relief, shit condition but at-least you would know.

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Matt_Boyd

@Matt_Boyd

Hi. I can remember when I was in limbo researching MS. If I brought it up people tried to make me feel better by saying things like 'It might not be MS.' I just wanted to know so I could process it. I think it's great you've come across Shift MS, lots of supportive people here. 🙂

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Si2020

@Si2020

Hi everyone, I am overwhelmed already by the reaction to my first ever post, the support is unbelievable & from people who just totally understand everything! I have mentally prepared myself for my probable diagnosis however that little voice in my head is always saying what if it’s something else, but what else can it be? Neurologist wants to treat me with Ocrevus if diagnosis is confirmed. Apologies for all the questions but will Ocrevus improve or stabilise PPMS? I walked to the shop with my wife & our youngest child yesterday & I used his pram as my simmer frame after about half a mile, was shattered when we got home. All seems to be going down hill quickly now that I know in my head there is something underlying.

WildBritain

@WildBritain

Hi Si I’m in limbo land too and awaiting my next neurologist appointment in March, nothing certain but I’m 99% sure it’s MS especially when I think back over all the times I’ve visited the GP or the hospital over the last 20 years or so. I’m new on the site too and it’s already been a great support, hang on in there you are not alone David

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jules5255

@jules5255

Hello Si I am sorry too that the prognosis is PPMS. I have just rejoined shift.ms and have found there are a lot of kindred spirit within this group 👍😁so share your feelings as we are good at listening to rants as we all have to offload at times. All the best jules5255 x

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Si2020

@Si2020

Thank you David & thank you Jules much appreciated folks. Feeling better today already 😂

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watsoncraig

@watsoncraig

O (Ocrevus) slows the progression which may look like stabilisation in PPMS, any improvements are a bonus.

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Si2020

@Si2020

Cheers @watsoncraig 👍🏼

Kingsway

@Kingsway

i had lumbar puncture, it came back negative....and here iam ppms

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Si2020

@Si2020

@Kingsway - that is unbelievable, on what grounds did they diagnose you then if the LP was negative? I hope you are keeping well 👍🏼

watsoncraig

@watsoncraig

I had symptoms, one MRI and heel down shin, touch your nose then my finger type tests but thankfully no LP

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Si2020

@Si2020

This is why I registered to shift.ms the information on here is second to none. Thank you guys 👍🏼