Forum

last visit to neuro

Hi everyone. I was diagnosed in January of this year, and initially told it was most likely the RR type, as only 1 lesion was found, on my brain scan. Ive had real problems with walking since last May, and now walk with 2 sticks, at a shuffle. Ive also had several spells of total body paralysis, which has flummoxed everyone, and terrified me, especially at first! In January I was given steroids to kick-start a remission, but unfortunately the only result was a craving for meat, having been mainly vegetarian for some years! My mobility problems have been getting steadily worse, and this, coupled with my age of of 63, has led to the neurosurgeon suggesting its looking more like PPMS. Although Id suspected as much, having read the MS Society literature, it`s still been a shock. So, here I am, a newbie to this site!

Hi Faith and welcome to our little gang…

Well yes given your symptoms and your age I think it sounds about right. I was 54 when dx and am now 59.

As you probably know, only about 10% of MSers have PPMS… so we are a very elite group. Most people with PPMS are dx over the age of about 45, but we do have some younger ones on here.

It is of course a great shock… but I can promise you it’s gets easier.

There is a general view that PPMS is the ‘worst’ MS but it’s not really the case. Aggressive RRMS can be very disabling and can quickly become Secondary Progressive. PPMS, like all types of MS, is different for everyone. We all have different symptoms and some symptoms in common. We all progress at different rates.

A few things to keep in mind… PPMS sometimes stops progressing altogether. Some symptoms will come along and then disappear and never come back. Some people with PPMS not only stop progressing altogether but actually improve. LOADS of research is going on right now into all progressive MS… so there is real hope of good treatments coming along. If you were going to get PPMS this is probably a good time to get it!!!

Come on here for advice and support… but also for friendship. We are a tight group and I can honestly say I don’t know how I’d manage without the lovely people on this board.

So welcome… glad to meet you and look forward to getting to know you.

Pat x

Dear Pat,

That was a real nice post,

I have been worried sick about this ppms, i thought that that was it, i would gradually get worse and with some of the stories i’ve read, that also i could eventually die from it( Clive Burr just dying did’nt help) but after reading your post, you have given me hope that this does’nt always happen. I’m not looking to the future with total fear now, just take one day at a time and to try and make the most of it.

Thank you Pat

Lisa.x

Thanks Lisa… it is sad when we hear of someone dying from complications from MS… but when you think of all the people with MS actually very very few die from it.

Remember that nearly everyone gets flu, spend a few days in bed and recover without a problem. Some people however die from flu.

Also remember that the press like to make ‘shock’ headlines… esp when someone famous with MS dies. The vast majority of us just keep on living with our MS and will most probably die of old age… or of something not connected to our MS.

Pat x

Hi Pat,

Thank you for your lovely, welcoming message. Youve reassured me and cheered me up, telling me there may be some relief from symptoms. 3 people have told me Im unlikely to recover my mobility, which is hard given my hobbies were hiking around 10 miles before this happened, and I was also a keen gardener. But Im accepting that my walking will be much shorter distances, probably visiting beauty spots by car and pottering around a bit. Maybe Ill now take time to learn how to use my computer properly! Im determined to make the most of every opportunity now, and to do the things I can while I can. Its a lovely thought that we are an “elite group”! How`s that for positive thinking!

Love, Faith.

Hi Faith, Welcome to the site - sorry for your diagnosis but it’s not the end of the world. You are still the person you were before diagnosis and you can still do plenty with your life albeit with some adaptations for the MS. We all try to support each other on here so hope you will feel that you can chat to us or moan if you need to! Take things a day at a time atm - it’s a lot to take on board. Teresa xx