Hello everybody,
I thought I would drop in and start chatting to all you lovely people 
Im Reah I am 30 yrs old and on Monday i was diagnosed with PPMS, as yet I don’t fully know what to expect - reading up on PPMS can be alittle daunting to say the least.
I don’t know what happens now other than I have an appointment to see my MS nurse is 4 weeks.
Do I get a Medical certificate stating my diagnosis, will i have to let certain people know?
Sorry for being such a newbie lol
Hi Reah and a big welcome to the gang. Not one you would have chosen but now you’re stuck with us!!!
Yes reading about PPMS can be very daunting and it’s best not to google as you’ll read all sorts of horror stories. For most of us PPMS progresses slowly and many people are still walking and working years after diagnosis.
For some of us mobility becomes a problem and although you’ll find this hard to believe, you do get used to it. It takes ages to get your head around PPMS so just try and not focus on what might happen (because it might NOT happen) and deal with the symptoms you have right now.
If you have critical illness insurance you can claim it now. If you are working, your employer is not allowed to dismiss you because of your diagnosis, and they are legally bound to make adaptations to your work to make things easier for you…that could be anything from placing your desk close to a lift to cutting your hours or giving you a less stressful position.
You won’t get a medical certificate so you need to save all the letters you get from your neurologist as you will need these as proof for when and if you claim benefits.
If you are working you can still claim PIP. If you are not working you can claim ESA and PIP. It’s all very confusing but the website ‘Benefits and Work’ is a good place to start. It’s worth becoming a member (about £20 a year) as they do invaluable guides on filling out the forms (which are a nightmare…sorry to say but it’s true).
You should tell your employer and of course you will need to tell family members when you feel ready.
Having PPMS is NOT the end of the world. We have many people on the site who have had it for years and are still living full and happy lives. It takes adjustments and your future will not be the one you planned. But you might know the old saying, ‘If you want to see God laugh, tell him your plans’.
The people on here are wonderful and I’m so glad you found us. Nothing is taboo…ask us anything. Between us we know more than any neurologist!
All the best,
Pat xx
Hi and welcome Reah, I’m still bashing out the details as they think it’s PPMS but after I managed to wangle a referral to London, they thought aggressive RRMS and I’m on a DMD but I think they’ll stop that in the summer as my mobility has worsened. It all seems confusing because we all have our own version of MS, even with PPMS we’re all different.
At one point I weighed about six and a half stone and the doctors thought I had Crohns disease, then I was diagnosed with MS and both neurology & gastroenterology said bowel issues weren’t MS related as I wasn’t that advanced… two years on they eventually agreed I didn’t have Crohns and frequency/urgency are in fact related to my MS!
Ah, anyway, if you drive you must tell DVLA. Personally, I surrendered my licence as I hate being in the car now, it makes me dizzy etc.
Hope to chat more soon
Sonia x
Pat has given you some great pointers to start with.Just keep logging in and you will learn loads on here.Oh and by the way a great big welcome,we are a friendly bunch and hope to here from you again soon Jo x
Pat- Thanks for all the pointers, alot easier to comprehend that the generic stuff I have been reading. Sonia- I hope you get some answers soon, it’s the uncertainty that is annoying isn’t it. I’m going to let the DVLA know, thankfully I waited before buying a new car until I knew what was wrong with me. Jo- Hello, I shall try to post more and integrate into this little online community, I do have a habit of lurking in the background reading post but not posting lol
Hi Reah and welcome to the gang. As Pat Says you can ask us ANYTHING, it’s okay if we don’t know the answer we will make stuff up. I have had PPMS for over 22 years and its been fun I wouldn’t have changed it for the world did I mention that I make stuff up? Keep smiling and laugh, it confuses people
Don
Hi Reah,
Welcome aboard the good ship PPMS. Yes, the not knowing leaves you in limbo for a while. But, now you have PPMS. This can be so different for each of us and our nearest and dearest. Hey! Don’t apologise for being a “newbie”. I agree with what folks above have said. And rather than repeat their advice and supports I’ll just add my twopence worth.
You can see others’ personalities coming through on their posts. We are all different even though we have our PPMS to deal with. We all have our ups and downs on sometimes stormy seas. Sorry about the metaphors. My advice would be to take things one day at a time and to try to have something nice and that you will enjoy planned ahead. What about that new car that you have delayed getting? Perhaps think about an automatic as they take all that gear changing away that can make your fatigue more difficult to deal with on a daily basis. I felt such relief at not worrying about the effort driving was becoming. Keeping independence going is so important.
On telling others, I found people somehow understood much more once they were told what was wrong with me. No, I hadn’t had a wee gin and tonic for breakfast and staggering when opening the door to the postie!! Some funny looks!! Now, I don’t bother and just say I’m a bit wobbly on my legs or I haven’t got my sea legs yet!! We try to keep smiling.
Sometimes though we find ourselves sad and worried and maybe even angry when new symptoms suddenly arrive. This is OK too to share here on this safe place. Don’t keep things bottled up. Telling family or close friends can be daunting. They may not always understand especially things like the fatigue which can vary from moment to moment. This forum is very supportive as you’ve guessed already. Nothing is taboo - really. So, if you need to offload this may be the place for you.
Enough, I say! Sorry for the rabbiting on. But, dip in and/or put into words your worries, funnies and even good times we love to hear too.
Anne ((hugs))
In they are offering HSCT to people with early ppms who have active lesions. Most MS neuros around the country are not aware of that. It has recently been shown that HSCT in ppms may not repair damage already done but will stop progression. There is a Facebook group UK HSCT and a specific one for HSCT ppms. Join those and you will be amazed at the stories. You will also find names of the London neuros that are supporting it and you can get your GP to refer you to them on the MHS. Because you are so young with ppms they may be willing to treat you in London. Moyna xxx
Sorry meant to say In London they are offering people with ppms hsct
Hi Reah,
Welcome to our lovely little group…you’ve had some great advise…as always on here. It’s just great to know that you can come on here with problems or worries and we will all understand what you’re going through.
Dont lurk in the background! Take care of yourself and come back with any questions, there will nearly always be someone to offer advise and help.
Nina x
Hi Reah
welcome to the forum.
Pam x
Hi Reah,
and welcome this is the best place to be,always someone on hand to help with any problems.
J x
Hello Reah
I’m a bit late. All the really good advice has been said. All I can add is “Hi”.
This is the best place in the world for common sense and expert views. Snow Leopard (Pat) has said it all really “Between us we know more than any neurologist!”
Hi
Anthony
Thank you all for already being friendly, welcoming and supportive. My attitude is very much…it is what is…and that was my reply to my neurologist when he told me and then asked if I was OK? Mona- I shall have a look into that thanks
Hi Reah
Another late to the party welcome, but as a PPMSer I’m always late to a party, I choose to call it fashionably late! Some good advice in these posts. My own advice is really just to expect the unexpected. You will have times when you think you have your head wrapped around this MS thing and then other times when it blows you away, and accept that it’s ok to feel that way. My own story in short. I am 47 now and was diagnosed 2.5 years ago with PPMS after about 18 months of tests (3 MRI’s, 2 evoke potentials, numerous blood tests, lumbar puncture and God knows what else). I have progressed fairly rapidly but am told by the doctors that I am the exception and as you see by previous posts there are those who are 20years post diagnosis and going good. Don’t let MS stop you living, you can become paralysed by your fear of the MS or you can choose to say F&£k it and live your life. The crazy thing is that I am happier now than I have ever been in many ways. Pre MS I was working full time, studying for my law finals, ignoring my family and not really living. Post MS I have retired and spend loads of time with my family and have developed a better relationship with my partner and daughters. I go out and play poker weekly and see friends sociably; I now know what’s important in my life and what’s not. So I would argue that actually PPMS was a kick up the ass that made me value my life and the people in it. Not saying I would choose PPMS over the healthy pre diagnosis physical state but definately mentally and emotionally I’m in a better place. Anyway, sorry for the ramble and welcome to the party!
Mr Wobbly
Just arriving as the welcome party’s ending, but welcome, Reah. Whenever you have a problem or you just feel down, drop in. Somebody will always be there with a helping hand. I have all the symptoms of PPMS but after three years and all the tests, nothing positive. The neuro said I could give PPMS as my condition though, and that’s useful when people ask me what’s the problem. Mobility deteriorating, but this year I got a Motability automatic car and it’s fantastic. After 50 years of driving a manual, I was apprehensive, but I adjusted immediately, so don’t be put off. I can get my Rollator in unaided, though not my little scooter, so at least I can get to places with friends without husband tagging along. Best wishes - we’re all in it together.
Hello folks. I’m joining Rhea’s party too if I may. A bit of background… I was dxd May last year with rrms, out of the blue. Three instances of paralysis in three days. Ambulance to a&e Saturday, admitted to ward, hundreds of tests including mri. Monday dxd ms. A speedy journey! I recovered well. Dmd followed but another relapse in September did the damage. I came out of hospital with a crutch. By March I was using a chair for any real distance. Saw Neuro today and we were back in agreement, it’s ppms.
She felt this was the case when I presented to her, aged 55, last year. She’s agreeing to let me continue with dmd, at my request, just in case… I’ll see her again in October and will have another mri in December. Even tthough I suspected this confirmed diagnosis today, I’m still a bit stunned. And a bit down. Scared too. Am I going to be confined to a chair and suffer bladder/bowel problems by xmas?! Will I have to stop driving. Lose another bit of independence? I’ve really only just got used to “having ms”, now this seems bigger, worse…? Sorry guys if I sound ott. I’m just looking for reassurance I suppose and be glad to hear your thoughts and experiences. Thanks.
Hi all,
well it looks like you have another new member, I have been told that I have MS ( looks likely its PPMS) I find out more Wednesday, Im seeing another neurologist Im 50 soon so its been a bit of a surprise, as in the first instance I just thought I needed new reading glasses !!! To be honest I have not had full use of my left arm since the start of the year and my wife wants some DIY doing so I hope he’s got some answers or the phone number of a good decorator.
Its great to read so many positive posts, as Im not sure what to expect, or what happens next, any suggestions advice or general chat would be great. Any rock fans want to chat about bands etc im here!!!
Chris
Hi Poppy and Chris
welcome to our “gang” the club that nobody would have chosen to join, but it really isn’t so bad, honestly.
You do need to give yourself time to get your head round the diagnosis, so take one day at a time, listen to your body, and if it’s telling you to rest, don’t fight it, and be kind to yourself. It’s a bit like a bereavement, going through different emotions, but coming on this forum will help, there is always someone willing to listen if you need to vent, and offer advice where they can.
Unfortunately, there is no magic wand, but ask if you need help from medication to help with symptoms you may have, an ms nurse is a godsend, so if you haven’t been referred to one, ask your gp or neuro.
Not sure if you will have been told, but you do need to tell DVLA and car insurers, and normally you are given a 3 year licence, but there should be no increase in your car insurance.
Once again, welcome to the forum.
Pam x
Want to second what Mr Wobbly has written.
I too am happier than I have ever been in my life. Pre MS I worked so hard and was so tired all of the time…little knowing what the reason was. I always seemed to be running round and round on one of those hamster wheels. It did take a few years to get my head around dx of MS (dx 2008)…and then a couple of years later dx of PPMS…but once I learnt to relax and live for today life actually has improved.
I now take joy in the little things. I love my little flat and my cat Dicke and we both (Dickie and me!) enjoy bird watching on the tree outside my window (although I get the feeling we enjoy it for very different reasons).
I moved into sheltered housing and what a relief not having to worry about paying a mortgage anymore, and if anything goes wrong I just report it.
But also I have found another important reason to thank MS. As most on here know, a couple of months ago I was dx with breast cancer (luckily early stage). Had this happened pre MS I’m sure I would have freaked out and been very scared of what will happen.
But MS has taught me to take it one day at a time. It’s taught me that nobody on this earth knows what is around the corner. It’s taught me that there are no absolutes in this life. That the only real thing is this moment we are living. It’s taught me that I can live with chronic illness, and with pain, and with uncertainty. Those are amazing lessons to learn!
So in a way that I’m sure is difficult for some to believe, I feel that MS has given me as much as it has taken away…and maybe more.
Pat xx