Last reply 4 months ago
Newly diagnosed with Primary Progressive

I am 62 years old and had in July this diagnosis. I t seems that every case/person is different
but I would like to share with someone who also has primary progressive.I have no complaints about my doctors physios etc but just feel a bit isolated and also because I am older it does not seem to matter so much that I have this disease affecting my mobility etc.

Liz .

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4 months ago

Hi @lizelliott and welcome.

I’m the same age as you, but I’m Secondary Progressive since 2010, originally diagnosed in ’97 although first symptom in ’85. So, I’ve had a bit longer to try and get used to this.

It’s not so much a case of it doesn’t seem to matter, there’s not a lot they can do for us, except manage our symptoms to enable us to get on with life as best we can. In fact, my Neuro discharged me. It was a mutual decision. It was a pain for me to get up and see him and there was nothing he could do for me.

MS can be isolating, but only as isolating as we allow it. We still have to make the effort, we are still the same person. We just have to put up with the blank looks, when people say, “Oh, MS!”.

You’ve done the right thing, reaching out here. We understand your feelings and your fears. We can empathise and advise. We can even arrange local get togethers, where we can put the world to rights.

4 months ago

As @stumbler says “you are the same person”. Your age doesn’t come into it or matter (I’m 47 with a PPMS diagnosis 3 years ago). There is not a lot the medical profession can do for us, research yourself and keep well. Ask on here as the place is a good font of knowledge.

4 months ago

Hi @lizelliott. I am RRMS but my younger sister is PPMS. We were diagnosed at the same time but the difference in our care and monitoring is stark. This is partly due to being in different boroughs, but it does seem a little like people with PPMS are left to their own devices a bit more. MS Warriors really are their own advocates, and more so with PPMS. Are you linked to the MS Society? The lovely thing about Shift, is that there are no boundaries or definitions which separate people. All ages, stages, backgrounds and worldwide locations. Hopefully, you wonโ€™t feel alone, because you arenโ€™t x

I have PPMS, I was diagnosed in August. I an 54 yrs old, my first symptom was when I was 52. I’ve only had 1 MRI and have pretty much been left on my own with this. I did get a foot brace and walker through the MS clinic that I go to, but that’s it. They told be I’m not going to get better, only worse. I get another MRI in February (1 yr after first one) to see if there’s further damage. Kinda think that it won’t make a difference what the MRI says, the Dr’s don’t help me anyways.

4 months ago

Dear @liselliott I’m 62, had the beast for 25 years, rrms for 23 yrs, was told all those years ago that my rrms would become spms in 10-15 yrs, it took 23 yrs so not complaining. We are all so different, don’t panic, ms is no longer the life sentence it used to be no matter how much of life you have left. We’re all here for each other no matter what type if ms we have, we’re always here for a natter or a question, and remember, there is no such thing as a silly question with ms!๐Ÿ˜œ๐Ÿ˜

4 months ago

Thank you for your comments and support, I am trying to adjust and manage the MS. and have just this last few weeks lost the strength to be positive . I have a supportive family and husband and just needed to touch base with people who can understand how I feel .

4 months ago

@lizelliott , you’re coming to terms with what’s going on.

Be patient with yourself.

4 months ago


The bad news is that you have PPMS; the good news is that you have quite a few people to chat with going through the same thing. I am probably the worst to give empathy to your fears – my positive attitude is who I am…

Supportive family & husband? Most people would give their life savings to have that. I have a supportive family & wife (+ friends) – so I get to keep my money.. ๐Ÿ˜‰

My 1st wife died 25 years ago from Scleroderma – I guarantee PPMS is minor compared to what she endured. Watching her taught me a lot of things; primarily that our attitude will decide if people embrace our challenges OR run away… Her friends still talk about Donna – she left a positive legacy with them.

Anyways, back to you – check out my profile. If you wish to talk privately with me – send a friend request. Otherwise – trust me; this site is very useful to read. 90% of posts are useless since PPMS is only one of the 4 variations of MS. Yet worth checking out…

Oh – and welcome…

4 months ago

I’m 52 and with ppms.Im not on any treatment for ms.If you can stay stress free it will help your body stay calm.I find mindfulness has helped so much dealing with my pain both mental and physical.Smile you can’t do anything about your age and it’s a choice on how you deal with you.If you are blessed to have someone to talk to be honest with them.Dont be alone.Go well stay strong.

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