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Home » Forum home » Primary Progressive MS

Prognosis, no answers I know but....

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Prognosis, no answers I know but....
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Byrony
17 Oct 2011 at 3:56PM
Top

Hi to all my fellow ppms'ers.

I hope you are all keeping as well as can be. I hope you don't find this question too intrusive,if so just ignore. I know that none of us know our future as far as having ppms is concerned, our neuros just give us a blank stare and a shrug if we mention prognosis of this monster.

I was diagnosed in Feb of this year and had symptoms for 8 years. I am still able to walk or should I say shuffle around my home un-aided with plenty of rest in between. Outdoors I have to use a stick for short distances and always accompanied. For long walks my faithful new wheelchair. I just wondered how long you good people had had symptoms and ppms and at what stage is your walking or non walking ability. I realise we are all different and that each persons ms progresses at different rates. How have you coped with your decreasing ability to walk? I know a year ago I could walk so much further than now and 2 years ago apart from tingling I was as fit as a fiddle. It shocks me when I think of the change two years has made, I suppose this is why I have raised this question.

 

Take care,

 

Sarahx

Boudica
17 Oct 2011 at 5:48PM
Top

Hi Sarah, no, no-one can give us a prognosis...in my case they can`t even give me a firm dx after 13 yrs of displaying classic PPMS symptoms.

 

So for me, progression went summat like this;

age - 45 - 47

 

noticed heavy left leg when walking, then began to trip up over fresh air...then humengously spectacular falls which I should`ve got an award for!!!!

 

within 2 yrs I was using a wheelie part-time

and for the last 7 yrs have used a wheelie full time

in the last couple of months, mobility is all but shot and hoist is necessary now...but as you know, I can`t get full funding for a ceiling one and floor one has caused such disruption, that it has gone back to where it came from!

 

The future? More of the same, I guess.

 

luv Pollx

Dogtanion
17 Oct 2011 at 5:56PM
Top

Hi,

I'm a relative newbie, being diagnosed at the end of September. Things got bad in April and I was referred to a neuro for the first time. I broke my legs 10 years ago and we'd always blamed problems with my legs on that but now we know otherwise! I'd had bladder problems and slight tingles in my feet but otherwise I thought I was ok. IFrom the end of last year we began noticing that I couldn't walk in a straight line and kept bumping into things. In April my walking deterioated and the tingles got worse and have never improved. I now walk with a stick outside but only for 10-15 minutes and holding onto someone for support, any longer and I need the wheelchair, I just get so tired.

I'm 45, and as you say what a difference a year makes. I'm a teacher and have a meeting at school on Friday to discuss my possible return - I've been off since just after Easter. I know I won't be able to cope but I feel as if I've got to try. The Occ Health doctor that I saw from work did say I was brave for wanting to try! But I'm the main earner and it seems silly to have to consider medical retirement at my age.

I've been diagnosed for only a few weeks and the future does scare me, all our plans have had to go on hold and some probably won't be fulfilled. It's just not fair.....

Snow Leopard
17 Oct 2011 at 7:57PM
Top

Hi, briefly mine has gone like this:

2006 got shingles and couldn't get strength back... very bad fatigue. 

2008 'vibrations' in legs all the time. Heavy legs. Looking back realised I had had symptoms of fatigue and strange sensations (numbness and light-headedness) going back about 10 years. Got dx with PPMS in April 08.

By 2010 was walking with walking stick outside, could only manage short distances. Moved into sheltered housing as could not manage where I was (on 6th floor and lift kept breaking down). Got mobility scooter.

Now - hardly walk outside at all and when I do it is slow and with walking stick or walker. Use mob scooter. Lots of fatigue. Dizzy on daily basis but some days worse than others. Symptoms vary day by day so some days I manage ok around my flat and just take lots of rests, other days spend all day in bed.

So for me it's been slow and I'm still doing ok. Don't have carers. Have a cleaner in once a fortnight. Glad I live in sheltered (even though I'm the youngest here at 58) as at least not isolated.

Yes, different for everyone. I'm hoping my keeps to this slow course, but who knows? I take one day at a time and try to get pleasure in the small stuff.

Pat x

Byrony
18 Oct 2011 at 5:58AM
Top

MS43 wrote:

Hi Sarah, no, no-one can give us a prognosis...in my case they can`t even give me a firm dx after 13 yrs of displaying classic PPMS symptoms.

 

So for me, progression went summat like this;

age - 45 - 47

 

noticed heavy left leg when walking, then began to trip up over fresh air...then humengously spectacular falls which I should`ve got an award for!!!!

 

within 2 yrs I was using a wheelie part-time

and for the last 7 yrs have used a wheelie full time

in the last couple of months, mobility is all but shot and hoist is necessary now...but as you know, I can`t get full funding for a ceiling one and floor one has caused such disruption, that it has gone back to where it came from!

 

The future? More of the same, I guess.

 

luv Pollx

Byrony
18 Oct 2011 at 8:58AM
Top

Hi Poll, Pat and Dogtanian ,

I tried to reply individually but as you will see I failed somehow!! Can any of you enlighten me on how to reply? Anyhow I am very grateful for your responses, it tells me nothing about prognosis but it does show me your bravery of spirit and how wondefully you soldier on with this wretched disease that robs us little by little.

 

I am sorry Poll about your ceiling hoist and the refusal to fund you, if I were rich I would buy it for you. I have always admired your bravery, you are an inspiration and I am richer for knowing you.happy2

 

Dogtanian you are new to all this like me and I admire your determination to return to work. I hope they can help you to return with some ease and help so that you don't over do things. We have to try but please realise your limitations, I am still learning my limits!! not easy. I wish you all the best.thumbsup

 

Pat what a lovely person you are, your positive approach to ms is an inspiration to all that read your posts. Thanks for the advise you have given and I'm glad you are one of the 'oldies' that stuck around on this new site. By old I only mean to these forums as I know you are young like me!! I'm 51happy2

 

Bless you all as you travel this road with me.

 

Sarahxx

hellMS
18 Oct 2011 at 9:46AM
Top

Dear Sarah

You made me feel very emonotional our journey into the unknown is scary and we need each other.  No-one else knows what we go through mentally and physically!  My biggest problem is pain BUT I'm not going to moan not today any way - much relief all round!

Take care everyone lets make this board sing with hope and support damn I'm getting all emotional again..M

Byrony
18 Oct 2011 at 10:28AM
Top

Hi hellms,

We do each other on here! Now I feel emotionalcrying2

 

Sarahx

Snow Leopard
18 Oct 2011 at 11:52AM
Top

Thanks Sarah. Lovely of you.

('Oldie' is all relative. Some of my neighbours are in their 90's. Treat me like the 'baby'. Really rather nice!)

Wonderful to have my lovely PPMSer freinds on here.

Pat xx

Byrony
18 Oct 2011 at 12:28PM
Top

I have just laughed my socks off as I realise I left the word 'need' out of my last post! 'we do each other' should say 'we do NEED each other' Well that little blunder has cheered my day upblushhappy

 

Sarahx

Snow Leopard
18 Oct 2011 at 1:57PM
Top

Well Sarah I read your post as 'we do need each other'... so my brain must have put in the missing word... but very funny now reading it again... thumbsup

Pat x

Boudica
18 Oct 2011 at 3:06PM
Top

Thankyou, Sarah, for your kind words. It is a reward to know my words may have helped you. Your`s do the same for me.

luv Pollx

oscar1
18 Oct 2011 at 7:20PM
Top

I too had DX at the end of Sept but have been having symptoms since 2006.

Found out from MS nurse that my notes say it is probably PPMS.

Have had walking problems since 2006 when scanned for a prolapse disc. Although there was some nerve interference from the disc they thought that something else was causing my problems.

I had another MRI in Nov 2008 on my head which showed up a 10p piece size lesion but nothing else. Around a year later I saw my neuro who arranged an LP which was positive for activity but still no DX.

Since then my walking has got much worse and had another MRI in july of this year where a few more small lesions had appeared and then the neuro told my wife and I that it was MS.

At the beginning of Aug I fell on to my back which agravated the disc problem and have not been able to walk more than a few yards ever since.

My symptoms may well have started before this but when you have isolated problems the last thing you suspect is a major problem.

Not sure if that is of any help as timescales for this seem to be wildly different for all of us.

Good to see the usual suspects posting support rto all who need it.

 

Keep well and smile as often as you can.

 

Tony

 

 

 

Tree65
18 Oct 2011 at 7:39PM
Top

Have had symptoms for 5 years and just been given a probable MS dx which my Neuro expects will become a full MS dx when i see the MS specialist. I too am a teacher but have been teaching part-time as a supply teacher for a while. Had to stop in March though as there is so much of teaching that requires you to stay on your feet. I love the job so was gutted. My Neuro also thinks it is ppms and I have deteriorated so much this last year. I walk with a stick when I go out and bounce off the walls at home as I have such poor balance. Have recently suffered awful burning and pain. The burning has gone probably due to gabapentin but the pain is still here.
As everyone has said, we all experience this differently but it is not easy to come to terms with and cope with is it?
Good to hear how everyone else feels,
Tree65 xx

Byrony
20 Oct 2011 at 9:35AM
Top

Hi all you wonderful people and thank you for your replies. I have just read a post by George on the 'Is this how it will progress' thread and he really is an inspiration to we newbies to ppms or any other form of ms. Have a read because I was feeling pretty worried about progression having got worse quite rapidly in the last 2 years. We need these old timers on our boards because they have the experience and wisdom of time. No offence intended calling you 'old timers' you are coolcool

 

Take care all,

Sarahx

cilla
25 Oct 2011 at 3:47PM
Top

Hey Sarah,

Old timer my foot!! I'm only 40. Only joking  I'm actually still kind of a newbie since I've only been diagnosed for a year and a half now although my fist neurological visit was 4 years ago for suspected sciatica. I can almost pinpoint the first day I realised there was something wrong and it was in fact seven years ago when my face went numb for two months and I started getting lumbar pain.

I must say I have noticed an accelerated decline in the last couple of years and I'm hoping that I will hit a plateau soon too. This board got me through the last year and a half along with my husband. So I'd like to add my thanks to all of the MOBS out there, kickin ass and takin names.

On a different note how come so many of us are teachers. There's the answer . MS is caused by unruly schoolkids!!!

Ciao

Lucythumbsup

tessbaby
25 Oct 2011 at 4:13PM
Top

Hello

I still haven't got full dx but doc seems to think it is ppms !!

My problems started in 2007 walking out of flip flops on holiday. And since then have gone down hill i don't ever go out alone walking balance to bad.I have a scooter that i take to local shops or in the boot of the car for days out but don't trust it on my own anymore as i have fallen out of it 3 times now :((.

My life is so boring now just manage to shuffle around the house i have been given a four wheeled walker get it on wednesday to see if it stops my falling hope so!!!!

I am now 41 and if things have gotten so bad in such a short amount of time i dread to think of my future :(((

But i have two great kids 19 and 13 they help so much and my parents and brother would do anything for me so in some ways i am very lucky :)))

Tracy x

 

 

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