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PPMS Disability

Excuse me all. This post is more information for me, as it is my best friend who has been diagnosed with PPMS a short time ago. I was unaware that you could be diagnosed with PPMS from the beginning, and not one of the other forms of MS first. Also, will PPMS always lead to complete paralysis, and bedridden? I seem to get that impression, and would like to know the truths to that. Thank you for your time as I look to become a little more educated in this matter.

Hi ya Friend and welcome to the board PPMS is as different as the people it has decided to live with. I have had PPMS over twenty years and it has been a gradual decline I have given in gracefully to each stage I started out on one walking stick but now am zimmer and wheelchair. Everyone of us are different and we share a commom condition I have never had a remmission which is what denotes the title Primary Progressive. Yes I have had infections which have left me bed bound but always temporary longest five months but if you ask each of us on this board you would get a different story. each of the stains ofms . RRMS spms etc are all different just because you have one not nessicary you go on to another.

Its not the end of the line Its the begining of a journey. The MS Society do all maner of books to help you both and there are loads of MS Society clubs check them out too. Plus find the details of your MS nurse if you have one they are invaluable in helping us all.

Don

PS read my Blog http://disableddon.blogspot.co.uk/2014/08/home-alone-again.html

for some lite relief

Remember laughter is good

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Hi Friend to all, Hoppity has given you good advice… PPMS is different for all of us. Not everyone loses mobility completely. It is generally gradual progression and very rarely bedridden these days as there are so many aids and adaptations people can use even if we lose our mobility.

PPMS always starts as PPMS. It never starts as another form of MS.

RRMS (relapsing remitting) can turn into SPMS (secondary progressive).

There’s lots of info online and look on this website on ‘What is MS?’ (see bar at top).

Suggest to your friend that he/she come on here… we’re a supportive bunch with loads of knowledge of PPMS between us.

Hope this helps.

Pat xx

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Hi Friend

Welcome to the forum, here we have a lovely bunch of people, always willing to listen, and offer advice when we can.

Don and Pat have given you good advice, but none of us can say what exactly is going to happen, as it is totally unpredictable and affects everyone differently.

Ppms starts as that, it does not start as rrms and move on, with ppms you do not have remissions. I can only relate to my ppms, and have found that progression has been a slow gradual decline, and whilst I use a power chair, life is still good, different to what I planned, but still worthwhile.

Wishing you all the best, and looking forward to seeing you on the forum.

Pam x

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If you do not mind me asking, how did PPMS start for all of you? Is it different?

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Hi Friend and welcome to the forum. Just as ppms affects each of us differently it will have been picked up differently as we all have different symptoms. Initially it looked as if I’d slipped a disc in my lower back and I had all different treatments and tests for it before a physiotherapist examined me fully and realised that my nervous system was reacting abnormally and got me referred to a spinal unit where problems were identified. Be reassured that doctors don’t give a diagnosis of ms until they’re certain that it definitely is as it’s a permanent diagnosis, it’s not something that will heal up and go away.

One thing I would recommend is that you encourage your friends to exercise to maintain core strength as that will aid then to remain mobile. Coming to the forum is very helpful too as they could get a lot of help and support here. Take care.

Cath

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Hi again, at first mine started with very severe fatigue, so much so that I had to give up work and was diagnosed with ME. A couple of years later they diagnosed MS… and it was only then that I looked back and realised I’d had many symptoms over the years… pins and needles, episodes of very painful hip or wrist, calf of leg feeling numb, tingling, periods of light headedness and dizziness.

All put down at different times to working too hard, anxiety, menopause and hypochondria!

But I would say we all probably had different symptoms to start with, although fatigue is pretty much shared by us all. I have met someone with PPMS who doesn’t get fatigue… so there you go… no one size fits all.

Pat xx

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So then does the weakness/disability start in the feet (lower legs) and just work its way up? Or again, is it different for everyone?

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It all completely different for everyone. There is simply no way of knowing. It’s very unpredictable.

We all try to work on living ‘one day at a time’.

But one thing that you might tell your freind, a lot of people think that with PPMS once you get a symptom, you’re stuck with it. Not so. Symptoms can come and go and you can have a few bad day or weeks or even months and things can improve again.

It’s really a case of getting to know your own MS, how it reacts and what helps or makes things worse.

Also stress can make symptoms much worse and for some people heat makes things worse, for others it’s cold weather.

I’m sorry we can’t give you more specific answers, but it’s a very complex condition that affects the central nervous system, and as I said, very unpredictable.

Hope this helps,

Pat xx

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Hi again, mine started with a numb patch on one of my legs, which my gp monitored for a while, and as the patch increased in size, sent me to a neurologist, who over time done various tests and eventually diagnosed me.

As you can see we all appeared to start differently, and ms DX seems to be a process of eliminations.

Pam x

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Looking back, my very first symptom was loss of fluidity in my movements - one weekend away , my husband commented that my knees and hips didn’t seem to be working properly. I hadn’t noticed anything at that point, but 9 months later I developed tingling in my right hand and went to my GP, who referred me to a neuro.

My symptoms now are mainly tingling in my hands and poor balance plus I can feel that my gait is affected. Humidity affects me more than dry heat, cold doesn’t seem to bother me. Fatigue is not (yet) an issue for me, but I have discovered this week that having a cold makes my balance unreliable.

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Mitzi, a virus or a bug always messes with MS. It’s because our immune systems are always fighting the MS, believing it to be a foreign body… so when something else comes along that it has to fight, everything goes haywire.

For the same reason… hyperactive immune system… many of us find that we rarely get a virus or a bug… or if we do, it sometimes just shows itself as worsening MS symptoms and not the usual sneezing, fever or whatever.

Of course you might know all this… but useful to put it on forum anyway for newbies.

Hope your cold clears up soon,

Pat xx

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Hi Pat!
BU**ER! Of course that makes sence!
And there was me thinking it was my clean hermit like existance that stopped me getting coughs and sneezes!
Plus the yearly Flu jab of course.

That’s another theory blown out of the water then!

On the up side I really cannot remember the last time I had a cold, but my poor wife seems to get them quite often!

Take Care!

Steve.

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Hi Steve, it’s the only up side I can think of!

I still have the flu jab though. About 6 years ago I didn’t have the jab and I did get flu. Blimey, thought I was on my way out and quite honestly I didn’t care. Was in bed for about 3 weeks and took about 3 months to recover.

So don’t use our hyper immune systems as excuse not to have the jab!

That was the last virus I had. Not so much as a cold since then!

Are you new on here Steve? Forgive me if not… rotten memory… and if you are, welcome.

Enjoy your weekend,

Pat xx

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Pat, thank you, I was aware that the cold could mess up my MS, but some of the other things you said were new to me. I just wish this cold would go and bother someone else, I’ve had it a week now and I’m fed up with it!

Cough, sniff, splutter.

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Like Pat I don’t get colds or flu even though I have a generous child who brings them home often. I can’t have flu jab either so don’t beat yourself up if for any reason you can’t have it. As we know, we’re all different.

Cath xx

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My diagnosis came about when an osteopath wrote to my doctor to say I should have an MRI, I thought I had a trapped nerve.

Looking back now, I remember that the weird flip-flop thing first happened over 10 years ago… I will kick my right shoe off and the first thing I know about it is the moment my barefoot touches the tarmac.

I actually became a fitness instructor and despite a few odd moments (yes, I will now know I “let go” for no apparent reason on a couple of rare occasions) and taught pole fitness classes for years. It’s probably a good thing I wasn’t a couch potato when I was diagnosed, I’d was weakling before I did the fitness thing.

I need at least a stick to walk now, fingers crossed I will stay on my feet for as long as possible though Oh yes, I’m 44.

Sonia x

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Hi Friendtoall and welcome aboard. My story is very similar to Sonia’s (as well as us being the same age!). Like her, my left leg just got worse and worse but it was not until I started dropping things and found myself unable to tie shoelaces or do up buttons that I went to the GP. Was dx 18 months ago, but was probably PPMS since 2007. Again like Sonia, I do my best to keep as fit as possible and would recommend to your friend that they focus on core strength and any sort of exercise to do that will give them a good ‘dripping with sweat’ workout. And, most importantly, tell your friend to do stuff they enjoy; need to keep spirits up.

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Hello all… Although the type of my MS is yet to be determined I am confident it will most likely be PPMS. I was diagnosed in Aug. 2014 and have yet to experience a relapse (exacerbation). I was 46 yrs old when diagnosed. I initially went to the hospital with double vision, weak legs, “foggy thinking” and with great difficulty articulating myself. The doctor initially thought I was having a stroke; then a heart attack. I was later diagnosed after many tests. My main symptom is my gait and “foot drop”. Prior to MS I was an avid jogger however, in spite of my condition, I continue to jog — regardless. I find that my condition is pretty much the same as the day I was released from the hospital over 3 years ago. It has progressed, howbeit very little. I take none of the conventional meds. I take my vitamins, watch my diet and exercise. The quality of life seems to be almost normal with slight variances. I would be interested in hearing from anyone who has been in similar circumstances (regarding unconventional ways they deal with their symptoms). Thank you everyone…

Hi,

I`m 56 years young.

I was diagnosed Feb last year with RRMS but that was changed in Nov last year to PPMS. The diagnosis was based on balance and dizziness. I had MRI scans and a lumbar puncture.

Present time my balance and dizziness have improved 90% and my main symptom now is fatigue. So progression is not happening. In fact it is in reverse.

My legs ache continuously but I am so used to it now I just ignore it.

I take vitamins, do a lot of cycling ( which does`nt wear me out ).

My only question is what happens next ?

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