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Now at the Primary progressive stage...

Hi everyone, my name is Poppy and I care for my mum whom has had MS for 5 years and just recently has moved up a stage to PPMS. I dont know how to cope anymore… NOONE in the medical profession help at all, ive never ever felt so let down. The MS nurse said to me and my mum last week theres alot worse basically accept it… now im sorry but how can you accept nearly being blind and mobilitiy getting worse rapidly and constantly being in pain. The neurologist has no idea what is going on and cant help and the eye specialist cant save her sight and only can maintain the iritis and glaucamo which is on top of the optical neuritis. Does anyone know of anything? or are going through anything simular?

My mum suffers bad discomfort at her neck and can only explain it has having a force pushing her. along with severe pressure in her head, wobbly vision when doing anything!!! Im so scared why arent there any answers, why does everyone shove the load onto the next person and never answer my questions or treat my mum with respect! :frowning:

Sorry guys its just upsetting me so much seeing my mum in so much pain and being unable to do anything at all.

Hi Poppy,

I’m sorry to hear the news about your Mum, BUT, to clear a few things up, nobody “becomes” primary progressive. At best you have not had things explained very well, and at worst you have been told something that is simply not correct.

Your Mum has either always had this type of MS, right from the start, or else she must previously have had relapsing remitting MS (RRMS), which could mean she now has secondary progressive - but not primary.

Nobody goes from RRMS to primary progressive - not unless they were misdiagnosed. Primary progressive is something you either have right from start, or never. You can’t change to it halfway through.

So definitely something up with what you’ve been told. Unless, of course, it was a typo, and you actually meant secondary?

Now assuming it’s Secondary Progressive we’re talking about, it’s important to remember it’s still very variable. Secondary progressive doesn’t necessarily mean your mum will deteriorate at a much faster rate. Secondary progressive can be very slow. It just means the person (normally) no longer has the pattern of attacks and recovery that are a feature of RRMS.

And remember, the MS has no idea what type it is. It’s just a label doctors use. Your mum doesn’t have a different disease today than she’s had for the last five years, just because doctors decide to slap a different name on it.

It’s true there are not a lot of treatments for Secondary Progressive MS (not that many for any kind of MS, come to that).

BUT, I’m confused when you say the neurologist has “no idea what’s going on”. Is he or she an MS specialist? I think you need to find out…

Because pain, visual problems and mobility problems are all incredibly common with MS, so I’m baffled that any neurologist would have “no idea”.

Or do you mean simply that he sees your mum so rarely or briefly that he never gets an insight into what’s really happening? Is she perhaps the kind of patient who plays down her problems, when asked how she’s been, so her consultant never gets a true picture?

If this is happening, perhaps you could encourage her to make a list, ahead of appointments, of things she needs to mention, so she doesn’t sit there and not tell him about any of it?

I don’t know what else to suggest, really. What’s the GP like? Has your mum ever seen/asked to see a pain specialist? And how about physio or occupational therapy?

Physio might help to some extent with both pain and mobility issues. It’s NOT a cure, but sometimes people can be taught ways to improve their muscle strength, balance etc. Occupational therapy is more about any assistive devices your mum might need, to help her get around, or do things. She should be able to access both these via the GP or MS nurse.

Is this any help?

As for answers, I guess the only answer is: “these things are part of MS”. No, there isn’t a pill you can take that will fix them all. But that doesn’t mean nothing can be done. Your mum should be getting help to lead the best life she possibly can, even though it’s not going to be MS free.

The MS nurse sounds about as much use as a piece of wet cardboard. Try the GP?

Tina

x

Hi Tina, thankyou for taking the time to write back to me. Well the neurologist made a error there then… possibly confusion. I will need to get that cleared up. He bascially says my mum cannot have any of the drugs available for MS and there is nothing he can do for her eyes. We see him everyday 3 months, we waited a year for pyscio, my mum had 3 session and they said they are unable to help because its not a muscle problem its a problem in the brain. We’ve had 2 MRI scans done but the neurologist dept have lost the first one done 5 years ago so cannot compare. Instead of providing my mum with things like you’ve suggested ‘pain management’ he dishes out anti depressates for the pain and mood. Your exactly right about the MS nurse, weve seen 3 different ones over the 5 years and some have said some awful things to my mum. GP is good but see him regular but he sees nothing he can do other than accept it. Same old story. Feels like no matter what i do whom we see, they either say sorry nothing we can do or just accept it and get on with it. All i want to do is find something to make my mums life more comfortable im not asking for a cure but they cant seems to give me anything what so ever! Thanks again tina for taking the time its really kind.

Poppy xx

Hi Poppy,

I’m really sorry your mum doesn’t seem to be getting the right help, and also that you’ve been told stuff that doesn’t make sense.

I’ve never heard of a physio who said they couldn’t help, because it’s a brain thing! Well of course it’s a brain thing, but that doesn’t mean there’s nothing that can be done to preserve or improve what strength and mobility a person still has, and reduce risk of injury!

Ideally, you need a neuro physio - ask the GP. An ordinary physio won’t be trained in dealing with neurological issues, which might be what has caused them to say they can’t help. But the job of a neuro physio wouldn’t exist if it were impossible for physio to help anybody with “brain issues”. What would be the point? But such professionals DO exist, which means they must be of some help.

It’s not always possible to restore lost function: if the brain has lost the ability to communicate with part of the body altogether, no amount of physio is going to fix it. But it’s all about making the most of whatever strength and mobility your mum still has. Specialist physio CAN help with this. It’s nonsense to say it can’t, because it’s a “brain thing”. Even if your mum is quite severely disabled, she can probably be taught simple exercises, appropriate to her abilities, which can boost things like strength and balance.

Did I read it right you saw the neuro every day for three months? I’m thinking either you don’t live in the UK, or whoever saw your mum was not a neuro. I’ve never heard of anyone in the UK - even at the more serious end of the spectrum - being able to see them everyday like that. Great if you could, but even more baffling why they apparently have “no idea” what’s going on with your mum.

I do understand why your mum has not been offered the standard disease modifying drugs. Most are not licensed for secondary progressive (I’m still assuming that’s what your mum must have), because they haven’t shown any benefit. There’s no point subjecting your mum to an unpleasant and possibly risky treatment regime if there’s no evidence people in her circumstances benefit.

However, treatment of symptoms is quite different. Anyone, with any type of MS, should still be able to get treatment for symptoms.

Yes, anti-depressants are commonly prescribed. Not always because the person with MS is depressed (though they might well be) but also because, as you mention, they can help control pain. Usually, anti-depressants are prescribed in a different (lower) dose for pain relief than to treat depression.

If the ones your mum’s on are not working at all, then I think you need to speak to the GP about tweaking the dose, or perhaps switching to something different. Not all drugs work for all people. It may be that your mum has been prescribed something that just doesn’t do it for her, and her doc needs to take the initiative and try something else. It’s very rare that someone doesn’t respond to ANY pain relief at all, but it can take some fishing around to find the right ones.

Good luck! I think you’re very brave, working so hard to look after your mum. I’m sure she’s very proud of you.

Tina

x

Hi Poppy, nothing I can add to the excellent advice and information that Tina has given you.

One thing bothers me. You don’t tell us how old you are but I’m guessing you’re quite young (I’m 58 so everyone under 40 is young to me!). I think you need support to help you support your mum. Have you been on the ‘carers’ board on here and the ‘young people’ board. I think it would help you enormously if you could get some support for yourself.

Also there might be some sort of carer support where you live. Google ‘carers’ and the town where you live.

It’s very very hard seeing someone you love going through such a hard time and all sort of emotions come up. Some of those emotions can be difficult to deal with. Being able to discuss this with other people who understand can make huge difference. Even if you are not the full-time carer for you mum it doesn’t matter… but sounds to me that you are taking a lot of responsibility and you need some help and support to help you cope.

I really hope that things improve soon for you and your mum. If you can both get the support that you need it would make a huge difference.

Take care,

Pat x

Tina i have never heard of neuro physio! I am going to get straight on that with the doctor. Thankyou soooo much for tht, as you said my mum was jst seeing a normal physio which would explain why they couldnt help but what baffles me if to why her neurologist would send her to someone who has no idea into this condition. There is so much to learn but it seems to be through forums rather than from professionals. I think i wrote that wrong my mum sees the neurologist every 3 months not every day but this will only be short term then we see him every year and yes your right that would be nice but that will NEVER happen!

My mums on several drugs and are currently trying a new one clonazepam ‘its meant to calm the nerves down’ but no sign of that yet but i must keep my hopes up otherwise i’ll jst give up. Tina after you explained the whole PPMS I believe my mum has had the wrong diagnosis from the very beginning and has always had PPMS. She has never actually had a relapse as such, she actually has problems everyday with one thing or another and just get worses, it nevers seem to calm down at all or rest for a while. Does that sound like PPMS to you?

I cant thankyou enough for all this information, its given me some hope! Thankyou again Tina x

Pat thankyou for taking the time to message me its means alot. I am actually 21 and have been caring for her for 5 years with my dad but he has been working for a few years now so im currently full-time. Its extremely mentally draining. Thankyou for your advise I will go onto the young people forum and see if anyone is in the same position as me maybe if a bit of normal conversation would be nice. I dont see many people anymore or have much in life not just because of my mum but i did have a nervous breakdown 2 years ago due to everything getting to much so im still recovering from that now. Social life seems to be one of the hardest things to get back to grips with.

I hope everything is going okay for both of you Tina and Pat. Thankyou again for your time.

Poppy xx

Hi Poppy,

Just to add, I can confirm the right kind of physio can really help. Mine is not a neuro specialist, but she did work and practice on MS wards a while ago, so she is fully aware of the needs.

My balance used to be terrible, but now after what amounts to 10 hours physio, I can balance on either foot for as long as I want. I believe this is due to retaining myself to do so.

So it is possible and it is possible that the right sort of physio may be able to help your mum in some way.

It does sound like she has been PPMS from the offset. To defend the proffesionals a little, this is a hard condition to diagnose but it sounds like they have go there in the end, even if they haven’t explained it to you properly.

There people are here to help, so next time you have contact, make sure you get from them what you need. As mentioned, a list is invaluable as it really helps make sure you get the points across you intended.

I agree fully with the advice you have already been given, it is good stuff.

I hope you manage to get things sorted for your mum soon.

Paul

Hi Paul.

Thankyou for messaging and WOW! thats great and well done you for getting to the point of being able to do that, you must have put alot of effort and time into it do be able to do tht. I am going to fight for a better physio and thanks to you all u have made me more aware.

A list is going to be done as thing crop up so i dont miss anything important and go from there.

Thankyou again and i hope everything stays the best it can for you Paul.

Many thanks Poppy