Another newbie here. Was diagnosed with PPMS on Monday and still reeling with shock as the diagnosis was not expected.
I have only had mild symptoms for about 8 months, developing a drop foot when out running for any length of time. Between then and now none of the health care professionals had mentioned MS and investigation looked focussed on a mechanical problem with impingement on a nerve (I have a few mildly bulging discs). Had an MRI recently though and was talked through the scans this Monday. Have lesions in my spinal cord and brain and doc fairly clear it’s MS. Had a lumbar puncture on monday too but diagnosis confirmed on MRI.
Been back in work the last couple of days but not at all productive (although glad I went in as it helps things feel ‘normal’ and gives me a bit of focus away from thinking about MS). Feel pretty stressed, like many Im finding the unknown future difficult and worried about supporting my family. I have a lot to come to terms with, on Monday morning I was blissfully unware and now desperately trying to learn something about what might happen and when (I now know that sort of information just isnt going to come).
It seems that relative to others on here It a got quick (if unexpected) diagnosis, at least thats one unkown I dont have.
Ill probably be spending time asking daft question on here trying to understand and rationalise whats happening.
It’s hard to deal with when it’s expected, but a diagnosis out of the blue must be an absolute shocker
I think that most of the people on the forum have RRMS or SPMS, but there is a separate page for PPMSers where I know you’ll find people with a wealth of experience and who can give you loads of support specific to PPMS. That’s not to say you aren’t welcome anywhere else because of course you are!
As far as what’s going to happen, I’m afraid there is no way of knowing for sure. “Plan for the worst, but hope for the best” is not a bad motto, but only if you are the type of person to be able to consider the worst without it becoming obsessive; the main reason for that being that MS is so variable, an awful lot of what we fear simply never happens and spending too much energy on it is an awful waste of time and energy. So, e.g., my next (“forever”) house will be an accessible bungalow, just in case, but I’m still planning on travelling all over the world as soon as my husband retires.
One thing is sure though: MS poses challenges that we would rather not have to face, but the vast majority of us still have a long, happy and fulfilling life because MS is not the end of the world. It can feel like it in the beginning mind you, but time and experience tend to make things much easier.
A couple of things that you should do sooner rather than later are to inform the DVLA of your diagnosis (they normally put us on a 3 year, renewable for free, driving licence - so they can monitor us) and check through your paperwork to look for any critical health clauses because MS is a payable condition. Your car insurance people will need to be told the DVLA’s decision, but they cannot change your premium.
Don’t worry about asking daft questions - sure as fate other people will want to know the answer too (me included)!
I have PPMS and you will be very welcome on the PPMS board. We are a very welcoming and supportive little gang.
As you may know, PPMS is a small percentage of people with MS… about 12%.
Some people think of PPMS as the ‘worst’ MS, but this isn’t necessarily so. Many people with PPMS have slow progression, and progression can even stop altogether.
Although there are no relapses or remissions, it doesn’t mean that once you get a symptom you will have it forever. Symptoms still come and go. You have to get to know your own PPMS which you will in time. Some things make symptoms worse… overdoing it, stress, viruses, heat, being the main problem areas.
We have PPMSers who are still working after many years and still walking ok. So as with all types of MS it is different for everyone.
Give yourself time to get used to the dx. Most of us had a good idea we had PPMS before dx, but you have been thrown into the deep end. As Karen says, we continue to live good, happy lives… it is certainly not the end of life!
Come and ask any questions you like on the PPMS board. We are experts!!!
For now, take it one day at a time. You will eventually get used to it and become your own expert!
Hi DrT, As the others have said, an MS diagnosis is always a shock but must be more so when you’re not expecting it - so commiserations! As Pat says, people think of PPMS as the ‘worst’ type of MS but that is not necessarily the case - every person’s MS is different and no one will get all of the symptoms you see on here. Although we all can empathise with each other - no one person has the same range of problems. What this forum is great at though, is support. Please stick with us - I hope we’ll be able to help in some way or other. As already mentioned, us PPMSers have our own board but we usually use that, this one and EL. Hope you will stay around on whichever board you feel like. Take time to get used to your diagnosis - it takes ages to get to grips with it but it’s not the end of the world at all. You just have to adapt your life accordingly. Hopefully you have good friends and family who will show you plenty of support but remember you can rant and rave at us if you want. We’re used to it! Welcome and take care, Teresa xx
Im beginning to be able to rationalise things a little, after all I didnt change from the day before the diagnosis to the day after, I just have a name to call my symptoms. Just having a name has had a big impact though. I guess it is helped at the moment by the relatively minor symptoms I currently have and the only thing I cant do that I did before is run, although thats pretty tough for someone who has always been very fit and active.
No CIC though so no financial silver lining to this particular cloud (I can regret not getting that insurance at my leisure now…). I have been revising my future financial plans though, at least to give me some comfort that I have a viable early retirement plan should my working life be cut short. I think I have been more obsessed with financial security that the MS! At least it’s given me a kick in the backside to finish the work on my current house so that downsizing in the future can be a viable proposition.
Karen, my doctorate was in control systems engineering, quite clearly no help to me at the moment!
