husband been dx with ppms

Primary progressive MS
1

Hello Everyone,

I was told my husband had secondary progressive MS and a month later now being told they think it is primary progressive MS, They are sending him to a london hospital now for further brain scan, lumbar puncture, bladder and bowel scan and he also had 6 bloodtests while we were told he may have ppms, After this second appointment we now feel scared, how bad is ppms get? We feel confused and need to know what we are facing

My question is to anyone on here, do you have PPMS? How are you coping and what treatment do you get?

The symptoms my husband has gotten in the last few months which has seemed to got worse are his walking is very unstable, reading and writing is very difficult now, making decisions for himself and feeling confused, cannot drive anymore, he thinks he needs to go to the toilet but he never can hardly which stresses him out more, he cant walk for long distances without falling over.

Does anyone have these symptoms on here and you feel better after treatment? We are wondering what the future holds and feel abit lost

Thank you xx

2

Hi Christine, sounds like you’ve been really going through the mill the last few weeks (I think I replied to another posting of yours).

For me it looks like PPMS but only time will tell, I was only told that diagnosis at the beginning of July so I can imagine how tough/frightening you’re both finding it at the moment (I think I’ve managed to go for 5 days maximum with no tears, not just for myself but I get the right old wobbles when people I know and love are cut up about it).

As it’s such a recent thing for me, I certainly can’t speak with anything other than my limited knowledge on the subject.

There’s no cure for MS regardless, so I think with PPMS, the main difference is that we won’t simply bounce back from our symptoms at some point, with or without steroids etc. Likewise because we will deteriorate at a pace, hopefully we won’t get the same sudden onset of symptoms that someone with RRMS might have (in that respect, it’s certainly something I can do without!).

I think the thing we have to be hopeful for, is that it’s not too aggressive, if it is agressive it just means life will get difficult a lot quicker.

I feel terrible as I’m not painting a very good picture BUT it’s probably not as scary as when you first hear that you have MS. Whilst there are no meds for it, there’s still complimentary treatments (accupuncture for example) and there are still things we can have that make life more comfortable, for example - I take amitriptyline at night to help me sleep, I believe it also helps with nerve pain. I’m also waiting for a neuro rehabilitation appointment to see what can be done about foot-drop (there’s devices for it etc). I’m also taking LDN (low dose naltrexone) which I’ve heard lots of good things about on here so it was worth investigating. My point is, there’s still some help and your GP is probably a good starting place, my surgery have been brilliant to me.

Take care Christine, you’re probably both going to need a little time to digest everything. I’m pretty sure my husband is depressed at the moment too, so first hand I know you’re having to bear the load too hugs

Right, I’m gonna stop there as I could waffle on a bit too much!

Sonia x

3

Hi Christine

It’s normal to feel worried and confused when you’re hit with the diagnosis of PPMS. I was told it was PPMS in July this year but going back I’ve probably had it for a few years. My Neuro explained that there isn’t a cure but they treat the symptoms. A good optician may be able to help with vision problems, mine put prisms into my glasses so I focus properly.

You mention he finds it difficult to pass urine, he should speak to the Neuro or gp and get referred for tests and he may need to learn to pass a small catheter into his bladder to fully empty it. He is at risk of infection if he retains a lot. The process is not difficult and many of us do this, myself included.

Nobody will be able to determine the rate that symptoms worsen. Just let him do as much as he’s comfortable with, and rest. If he’s not steady on his legs get him a stick. I felt daft going out with mine but now I don’t even think of it. Please don’t fall for the tale that PPMS is the worst, it’s not, people are all unique and progress differently.

I hope he gets these problems sorted out

Cath x

4

thankyou so much,it really as helped me and my husband reading what you both have said,it is a shock to us both its all happened so quickly aswell.i think staying positive is the key,we adapt whats really important is looking forward to doing things together getting out,iv hired a mobility scooter for when we stay at my mums in clacton next week,i just wished they had a 2 seater one lol we would love that, getting proper equipentment around the home will we are waiting for someone to come and assess the home a stair lift would be good,once we get all we need,we can get on and enjoy life im determind to,make him laugh and smile,again x

5

Good on you Christine, staying positive is the only to to go! People keep saying I’m brave, I’m not tho, I’m flippin’ terrified but what else can you do?! Making best is best all round and having some fun stops you cracking up :slight_smile: A double scooter sounds like loads of fun! I’d like one too when the time comes

Sonia xx

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my husband as really bad headachs is there anythink that will help as normal painkillers dont seem to

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I had a similar problem Christine…I was advised by someone on this forum to try one ibuprofen and one paracetamol. I’d previously been prescribed tramadol which hadn’t worked, so I wasn’t overly confident that this new combination would work but it did and has done on almost every occasion since. I don’t take it too often as its quite a strong combination. I was told that the original suggestion was made by a doctor. Worth a try! Hope it helps. Nina x

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I’m also loving the scooter idea. As you know I’m no expert but if headaches continue it might be worth seeing someone but I try to rule out usual causes first, I get them from: dehydration, stress, tiredness and most commonly for me is eye strain. Sometimes I need a day without reading and that helps.

Enjoy your break away and try to relax. Take care.

Cath xx

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thanku nina,i will try that ill go by some today,ill let you know if it helps…and also thanku cath i think its part of the ms his had them most days for years,the only time they stopped is when he was on steroids for a week he said it felt great,were going to doctors wensday,ill ask more qustions.im still learning to use this forum,but i have found it is really helping not just mick but me aswell.i felt so isolated before,his been so down the last few days,im trying to pick him up.his started laughing and smiling again,and you both were part of that thanku so much,allways here for you too sending love christine xxx

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Hi,can I just say that I had guessed I had PPMS way before my dx due to numbness and right leg weakness. I think my PPMS started around 2001.I went from 1 walking stick to 2 walking sticks by 2005 and used a walking frame indoors.It was a graduall decline.Before I moved to present address 30 months ago I was struggling as had a step indoors and legs were getting weaker,also right hand/arm.I am now on the level so can use wheelchair/mobility scooter in and outside of my flat,my husband being my carer.I must say that I forget at times that I have MS as I keep myself busy as an activities coordinator since I have lived here,arranging activities for elderly and disabled.I have foot/leg spasims daily and need bed rest most days.I am on Baclofen and take Lopermide to control my bowels as also on other meds for diabetis and underactive thyroid.I am 70 next birthday.My husband has to assist me in to bed by lifting behind my right knee into bed and then I can roll to my side and be compfortable.I could lift my leg myself until 18 months ago.I can transfer to and fro the toilet my holding on the bars.Showering makes me excusted so I have an assisted bath by a carer, in this building we have a bathroom that has a bath lift.Everyone is different and it is usually a gradual decline,bit by bit. I will not give in to this awful condition and try to live life best I can.Of course things I can do are limited but I get on and do the things I can do.Yes,I cry at times with frustration and think why me? I don’t think what may happen in the future as I could stay pretty much the same now with no other MS problems,perhaps just get a little weaker.I hope all goes well for your husband.Take care.x

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So pleased that you’ve hot your husband smiling again. Fingers crossed the magic potion works for him. There are always loads of really kind people on here, with an enormous amount of knowledge about progressive MS…so you can be sure there will always be someone around to help. Mine is actually secondary progressive. Another trick re headaches, that I gleaned on here is Red Bull…don’t ask me why it works but it often does…it’s not the caffeine though as coffee doesn’t do it…in actual fact, for me, at least, coffee can make matters worse. Come back and let us know how he gets on. Love Nina x

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I can back Nina up on this, as a migraine sufferer (and a really bad time with a wisdom tooth!) combining pain killers (ibuprofen / paracetemol) does work as they are different drugs, just don’t go as far a max dose on both!

I guess the tip with the redbull is probably the caffeine (Check out the ingredients on a pack of Anadin, loads of caffeine!), I personally cannot abide the stuff, the smell alone is enough to make me think of migraines! lol :smiley:

I think I’ve hear of people on here being given stronger stuff, like morphine so it’s worth finding out what the options are from your GP. Good luck, I hope something suitable comes up

Sonia x

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Hello I’m new on here so want see if get advice etc! Husband is 38 just diagnosed ppms yet still not on any medication for symptoms. Finding the ms nurse not much help and it hell to get to speak to them. Was told go gp last week to start amantadine as his fatigue wiping him out but gp laughed and said no so didn’t give him anything. No appointment for neuro doc yet as problem with him getting clinic so it like limbo for husband as each day he getting worse and no one helping him. If docs would of picked up on this five years ago instead of saying it was fibromyalgia would he be this bad still? I’m so upset I trying help him but he feels he useless now and the list of problems he got walking shaking legs , urinae problems constipation buzzing all over body breathless also his lips started slanting down one side like had a stroke and arms feel like bricks. I’m sorry if going on just need to no is this normal??

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Hello,

That is an terrible state to be left in. Amantadine is commonly prescribed for fatigue and I don’t understand why your GP refused to give it to you.

You should also have been referred to a Continence Nurse for the bladder and bowel problems.

Please ask your family or friends to recommend a GP. You are entitled to choose any surgery you want, as long as they have space. When you phone the surgery explain that you are looking for a doctor who understands MS, or is at least sympathetic . The receptionists know their GPs very well and should know which one is most suitable for your husband.

I can’t say why your husband wasn’t diagnosed sooner but it’s not likely that there was anything they could have done to stop the progression of the disease.

It sounds as if you two have been left out in the cold. Please come back here as often as you want to. You’ll find a lot of sympathy for your situation. And you’ll get the benefit of the decades of experience that we have here. Unlike your doctor.

I hope you’ll be back soon,

Regards

Anthony

15

Thank you for replying yes it has been horrible time and I hate seeing my husband go worse all the time. He has got appointment for continence team next week so hoping this will help as when he had scan in April his bladder was full at 192 which nurse said was high but it been 8 weeks to get this appointment he struggles with passing and it never feels empty. Also past few months it been a concern his lip goes lopsided like I presume a stroke and his speach slurs is this normal??

16

Hello

The reason the GP wouldn’t prescribe Amantadine is because it’s only prescribed ‘off label’. This means that although it’s a licensed drug, it’s not actually licensed for MS. So typically, a neurologist will either write a prescription for a small amount and write to the GP, or just write to the GP. Then the GP will be able to continue prescribing.

So until your husband sees the neurologist, the GP won’t prescribe Amantadine. It’s crap, but that’s just the way of it.

It’s good that he’s seeing the continence nurse next week. They should be able to help with the retention problem. It might be a case of intermittent self catheterising resolving the retention. That way each time, his bladder will be completely emptied. Have a look at Catheters | MS Trust That has details of lots of different types of catheterisation.

The continence nurse should be able to help with bowel problems too. Does he already have a prescription for a mild laxative like Movicol/Laxido/Magrocol? If not, that might help. Or something like Lactulose. It will really depend on how bad the problem is. There may be other solutions in the future. And these your GP will be able to prescribe.

It’s a real shame it takes some people so long to be diagnosed with MS. But as Anthony said, there’s probably nothing that could have halted the progression. It’s just symptomatic relief and physiotherapy that you’ve missed out on.

Best of luck.

Sue

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Hi,

The continence experts will probably teach your husband about Self Catherisation which is how to get urine of a bladder that’s not behaving. I do it all the time at home.

Slurred speech and a floppy face are common symptoms. There is speech therapy and exercises which can help with these problems.

The same goes for walking, physiotherapy specifically directed at the areas your husband needs to concentrate on can make a big difference. I’m seeing a physiotherapist at the moment about exactly the same thing.

Incidently, I was diagnosed with PPMS about 8 years ago (and I’m 62, but don’t tell anyone).

Best wishes,

Anthony

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I was going to reply to this post & noticed it is now 5 years old. A lot of things change in 5 years. Terry

19

You’re right about the OP being 5 years old, but the post by Traymike is recent. And relates exactly to the title of the thread, which is I think why Anthony, and definitely why I, decided just to post replies and not worry about the beginning of the thread being so old.

Sue

1 Like
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I just posted today so be happy for any advice