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Secondary progressive

Hi, I’m new to this…my husband has secondary progressive MS. He was told it had moved on from RR last year. His main symptoms are poor vision, fatigue, poor balance and not able to walk far. He has been pretty stable for about 5 years but i think he had an attack about a month ago and his symptoms have got somewhat worse. His balance is horrendous and without his stick walks like he is vegy drunk,he has developed a tremor in his hands, his speech is slurred and his feet and ankles are swollen amongst other things. After previous attacks the additional symptoms have only lasted a brief time and things have gone back to how they were before the attack…over a month on and no change, he has been to GP and had check up and blood tests and all ok. Is this anyobe else in a similar situation? How long do we leave it before we accept these symptoms are permanent? Who do we turn to for further adaptations to our home? Feeing frightened!

Hello

When you’ve become used to a remission following relapse pattern, you expect the symptoms to improve after some time. The problem with progressive MS is that often the symptoms do not improve, or only partially.

Everyone’s MS is different so we can only talk about our own experience, but for me, a month with no remission would be perfectly normal. In fact 3 months without remission would be perfectly normal. I’m now ‘Progressive Relapsing’, so can have relapses with some remission, but can’t expect complete remission. In fact I often didn’t have complete remission when I was RR.

So, I suppose what I’m trying to say is no one knows whether your husband will recover from the current symptoms. Or whether any improvements will be complete or only partial. In a way, you and he need to be patient, but also see if he can get some physiotherapy help. If there is a community physio service where you are, you could try to access this (maybe ask your MS nurse, GP or neurologists secretary). That might help him get over this attack/flare/relapse.

Best of luck

Sue

Hi Sue, thank you so much for your response. We’ve been to see our GP and had bloods etc done and all good there, so been in touch with MS nurse to see what she recommends, currently awaiting a call back. As you say everybody is completely different but it can be useful to hear other’s experiences. Thanks again. X

Hello, have not been here for a while so sorry if this is a bit late. My husband has a similar background to yours. MS is so difficult to predict, I am hoping that your husband has managed to regain some of his health. The other issue we have found is that the medication used to treat MS often has side effects that are very similar. So you take something for pain, for instance, but other symptoms get worse. It is very hard to identify and even harder to manage. Hope things are better for you both now.

My better half moved into SPMS about 4 years ago and has gradually got worse over that time. The last 12-18 months she’s fallen off a cliff edge to some extent. 4 years ago she could walk, albeit with a stick and we used a wheelchair or mobility scooter when out shopping. She could look after herself, cook, bake, make me a cuppa etc. Within 18 months she’s completely immobile, confined to a wheelchair, no movement in her left arm/hand, can’t dress or wash, has a SPC, can’t even turn herself in bed (she has a hospital bed too). She’s in constant pain with spasms.

So hard to predict where this illness will go. You read so much online about MS progression but very little really mentions those few sufferers who get to the advanced stage - most just says sufferers can live a full and long life like non-MS sufferers. It’s almost like those who progress to EDSS 8 and above (my wife is between 8 and 8.5 now) are left out of discussions.

Sorry, rant over!

Hope your husband is feeling a bit better now and recovered a little.

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Im also very much like Sue.

Initial attack out of the blue 6 years ago, no warning signs, diagnosed as RR, no complete recovery, stayed pretty much like that for around 18 months, then gradually worsened without anymore obvious attacks, then it was confirmed that I had progressed slowly to SPMS.

I’ve pretty much been in my current position for around 18 months, mobility is not good, balance isn’t too bad, but absolutely awful strength in my upper legs , which is the cause of my poor mobility, walking distance is shocking compared to 18 months ago, in fact even 8 months ago.

The more I try to push myself the worse everything becomes to the point that I’m just tripping over, with hardly any foot lift at all.

My consultant, like Sue, has labelled my MS as SPMS with Relapses, even though I’ve not had a sudden dramatic change to my symptoms, they’ve just gradually worsened.

My husband has spms he never had rrms; a little mobility but uses frame and wheelchair, has a spc our biggest issue is his cognitive and processing ability has affected him the most and is so cruel and difficult to care for someone like this. He has no memory and little speech. But to look at him he looks so well - it must be the care he recieves! Lol

the future seems so bleak and lots of questions as to what that might be like and how long. It’s so hard to care for your loved one when you get nothing back in the relationship!

sorry to say the future is nit great for those with spms

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