Need to get past this anxiety

Well I have had sight of the Radiologist report from November (asked for it for PIP Appeal). Mild diffuse cerebral atrophy throughout. Lesions and lesions etc. What concerned me most was damage in an area of the brain which is highly suggestive of PPMS. Now this with my GP of 7 years still bleating no there are no signs of MS. Having read it I am relieved that it is pointing more to MS and not vascular dementia as I had feared. I am struggling to be positive about my way forward as an almost 63 year old female house owner living alone. I have grandchildren I dearly want to see grow up etc. I am worried about my walking (ok at the moment but do not know what will happen). I know and expect there will be cognitive decline and am considering Power of Attorney etc. And yes I do know about the McDonald Criteria but there comes a time when we live with what we live with on a daily basis. The Neurologist has already told me this is not the typical pattern of MS and there will be no treatment available. I am really just looking for any positive pictures that people can present to me - of how it has been and how they are coping. Thank you.

Hi Thistlelass My advice would be to stop worrying about what might happen. Easier said than done, I know, but each of us is different and there is no certainty that your mobility will decrease or that you’ll have cognitive issues. I’m 68, shortly to be 69 and was diagnosed with PPMS in October 2017. My mobility isn’t as good as it once was but I walked with poles on a rough path in the Lake District where I live this morning. I was out for a couple of hours. I have no cognitive issues and have never had any. Live for today and enjoy what you can do. Let tomorrow take care of itself.

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Thank you for that Moirah. I have a picture of you in my head out on that trek. I am trying to be as positive as possible but the anxiety finds its home as usual. I had/have plans for my life and am just going to try and get my head right to try to carry them through.

I was diagnosed nearly thirty years ago so I have deteriorated slowly just because you give it a label it don’t mean your life is over. Think nice thoughts. One trick I found useful was think of a special place, mine is from my childhood a place where I was happy and safe. I think of it when the nasty thoughts come in and it helps me, I also go there when I can’t sleep and I do breathing exercises to get to sleep, find them on YouTube or get a sleep book. Xxx Don

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“Grade 1 cerebral atrophy is associated with mild cerebral atrophy, and the changes in the brain are usually minimal and are mostly related to the normal ageing process.”

Hi there!

I am hoping your problems are related to MS and not vascular dementia…finger crossed for you. MS isnt exactly something we`d choose to have, but I think it would be preferable to the former.

This lockdown is enough to send anyone up the wall…but hang in there…it looks like lifting…but keep safe chuck.

Boudsx

Thanks everybody for your words of support. I am very scared at the moment - of having dementia first and progressive MS second. I have little energy to get on with household tasks etc and find myself thinking I should just give up my house and move into a flat etc Things just getting on top of me at the moment and I seem to be ver alone with some dark thoughts. So thank you for listening

If you ever need to talk on here you can message me anytime.I know what its like to have those thoughts.

Good evening everyone, I’m new to the forum. I was diagnosed with PPMS back in February this year. very odd experience as I had a phone call from neurology dept. receptionist/consultants assistant. She informed me that it was PPMS

After 2yrs of investigations - MRI x2, Lumber Puncture & CT scan all months apart no communication between I was told It was PPMS

OK, so what now???

Since February we’ve had the Covid-19 Lockdown & I’ve gained weight Lost stamina I generally feel rubbish.

I just sat in on a Webinar - interesting - Menopause & MS, this evening. Very informative. I should have asked questions but didn’t. I’m not good at participating.

I will find this easier.

Thanks for listening.

Take care out there & when you have them dark thoughts, get out the torch & get in touch with anyone from this forum.

You are not alone & never will be.

Terry

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Hello Mochalady, youve added your post onto anothers thread. Youd do better if you start a new thread chick. Youre new here, so not to fret.

I havee PPMS too…the spinal variety…am told it is very rare…no treatment for me as I`ve had it 22 years.

I here they are using Ocrevus now for PPMS…but you have to fit a certain criteria…your neuro would know more about that.

Are you still mobile, as that is one of the musts.

Boudsx

Hi… about maybe moving house…that`s a huge step, but if you have the help to do so, then it could be good for you…ie less to maintain.

Take care chick

Boudsxx

APOLOGIES

Hello Thistlelass.

I understand all your concerns. Like Don, I’ve been 30 years on the PPMS roadshow and it’s been a very slow roller-coaster. But I’ve adapted, kept my friends, managed to keep working until 2012, become a father (now divorced) and live in sheltered housing with a choice of company or splendid isolation. Look and plan ahead and enjoy what you can do.

Steve.

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Hi again, no need for apologies. Just trying to steer you in the right direction.

take care

love Boudsx