kober77 22/03/18
Last reply 3 months ago
Newly diagnosed

I got diagnosed with PPMS on March 12 2018. I’m little scared I’ll admit just going through the motions till I start treatment looking for friends for advice to chat with etc.

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stumbler
4 months ago

Hi @kober77 and welcome.

When you get over the shock of your diagnosis, you will consider yourself somewhat fortunate. A year ago, there were no treatments for Primary Progressive MS (PPMS). 😉


grandma
4 months ago

Hi Kobber and welcome . We’re such a mixed bunch from newly diagnosed like you to old hats like me, so sit back, take your time, you will so many questions at the. moment that you will get stressed thinking about them. Stress not good for MS. So take a deep breath and deal with things on a daily basis and write your questions down, so you can ask your MS nurse or Dr when you see them. Hope all goes well but you know where we are. Good Luck😍


edmontonalberta
4 months ago

@kober77

You live in Saskatoon? Cool… My wife & I will be driving through in mid-September on our way to Winnipeg. We should get together.

I was diagnosed with PPMS less than two years ago. Other than walking like a drunk & going on lifetime disability, things are not too bad.

Gord


vixen
4 months ago

Hello to you over there in Canada, @kober77. It’s great that you have discovered Shift within 10 days of diagnosis! When are you going to start Ocrevus? We haven’t quite had it approved in the UK yet. Allow yourself lots of time and space to absorb the diagnosis. Don’t rush any decisions, and try your best to avoid all stressful situations, as there’s no doibt that stress has a real impact on us folk with MS. You are amongst great company here, we all have our stories and an understanding ding of what you’re going through right now. Take care 🙂


marcyg921
4 months ago

Hi and welcome to Shift. Sorry to hear about your diagnosis and even though I have RRMS rather than PPMS, I’m here if you ever want to talk or if you have any questions and I’ll do my best to answer.


petlamb
3 months ago

@kober77

Hello and welcome. So sorry to hear about your recent diagnosis.

We’re a friendly bunch and there will always be replies to your queries from people who have first hand experience of MS so you’ve come to the right place. 🙂

Use the magnifing glass in the top left hand corner to search for past posts – it’s very informative and don’t forget to check the map for MSers living close to you!

Suze x


rambles
3 months ago

Hello @kobber77! I’m sorry about your diagnosis but it’s great that you have found Shift – it is a really helpful and friendly site, with folks only too happy to try and answer questions you might have! You’ll find lots of information and good tips on managing treatment, as well dealing with your diagnosis. Take care☺!


ammatime
3 months ago

If you want to chat, i’m here : )


andrew2308
3 months ago

Hi all another newbie to shift . Problems stated 12 to 15 months ago with lower back pain, it progressed and a slight limp occurred on my right leg. Had enough, went to see the doctor and I was referred to physio. A few basic test were done and they referred me for an MRI of the spine and neck.

Had a call from the physio with the results of the MRI, their was a lot of motion artefact but generally there was nothing sinister, to be sure the lead physio referred me onto a orthopaedic consultant.

On seeing the consultant, he requested another scan of the neck,his thoughts were going in the direction of a disc pushing in my spinal chord.

Had the scan saw him again no disc problems but lesions visible in the chord, arranged a brain scan .

Several months had passed since first seeing the physio, I decided to pay for a scan had this within a week of seeing the orthopaedic consultant. The scan was with gadium to show contrast . The report I received showed lesions in my brain and spine and asked me to have me referred for a neurologist appointment via my doctor
Finally had appointment at end of August 2017 saw my scans did tests and told me it was MS , inform your employer, notify the DVLC , And an appointment for 6 moths time.

I received a letter from the hospital re the above appointment and a few things changed they wanted me to go in for a lumber puncture and possible steroids.

I have to say I wasn’t lookin forward to that, but I have to say it was absolutely fine no pain no headaches. The result showed positive for bands.

Called in for Steroids 3 day iv course, after first day all pain went away ( wonderful) days 2 and 3 back to where I was before steroids. The most difficult part of high dose steroids is I didn’t sleep and stopping suddenly was awful, felt out of it for two
Days after they finished.

To finish this saga called back in December, received a diagnosis of primary progressive MS
the hospital have been great but resources are limited, as we all know there’s not much available for ppms in the form of treatment only symtimatic relief

Sorry for this long essay


vixen
3 months ago

Hello @andrew2308, welcome to Shift! I think there may be other folk from the Nottingham area on this site. You seem to have taken everything in your stride so far, it’s not easy. Are you working?

Last year saw the first breakthrough drug approved in Europe for PPMS so things are definitely happening. By the way, you can start a separate conversation introducing yourself, you don’t have to tag onto an existing conversation, you are very important you know! Have a good Sunday x


andrew2308
3 months ago

Hi thanks for the info , it’s a bit like a dart board, ended up here!!
Still working full time , yes I’ve been told by the consultant about this one, can’t remember it’s full name. I had an appointment with my ms nurse a few weeks ago, I don’t have all the information but she mentioned it was not cut and dry weather NICE would licence this drug for ppms , this is one persons view but where else do I get information from, if not the professionals?


vixen
3 months ago

Hey there, you could go to the NICE website itself, or MS Society maintains updates on the situation. You can also find info on ongoing trials for drugs and medications. Ocrevus has been turned down initially for RRMS but they will make a judgement for PPMS around October, I think so fingers crossed……

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