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Sister Going Through Nightmare Relapse

Some might know that not only do I have MS but also my sister and first cousin.

My sister was diagnosed around 15 years ago, at first the doctors thought she had Meniere’s Disease, an inner ear condition, for which she was treated for many months, coincidently everything seemed to settle down after a few months, but a year or so later she lost all use of her left leg, was taken into hospital and then the MS ball started to roll, basically the Meniere’s Disease turned out to be the start of the MS and not Meniere’s at all.

Over the years she has had maybe 2 relapses, which although not massive relapses they did put her in hospital for a few days and also onto a course of steroids.

Then about 6 months ago she had another one, which again put her in hospital, but even though she was out within a few days her symptoms didnt fully go away, but she was managing, 8 weeks ago she had yet again another one, this time it has totally wiped out both legs, bladder control, bowel control, speech & hands, even her thinking and communicating is all the place.

The hospital initially thought the had had a stroke, she was taken in, put on steroids and sent home after a few more days in hospital.

Last week she had her follow up with the consultant (same one as I have), he told her he thinks she is still in the relapse and because she has now had 2 relapses close together she will be going onto DMD’s.

Since seeing the consultant last week she has dramatically deteriorated, she can hardly speak, communicate and has terrible involuntary movement, to the point where she has caused severe bruising to her face, arms & legs, she is constantly crying, hardly eating and her bladder control is non existent, she also has not emptied her bowels in 5 days, things are dreadful at the moment for her.

Her husband (diabetic), is trying his best, but this relapse is so bad he just cannot cope.

He’s afraid he’s doing more harm than good, because even lifting her onto and off the toilet is causing her to fall and knock her self.

She just cannot do anything for herself, both hands have locked up like claws, her face has actually dropped a bit, like a stroke so she’s having trouble eating and drinking.

He’s dragged the mattress from the bedroom upstairs into the living room to try and make things easier.

THIS DAY & AGE NOBODY SHOULD BE LIVING LIKE THIS !

He rang me last Friday around 4pm in a terrible state, he had been trying for over 6 hours to get a doctor to come out, but they had still not rang him back, he had also rang 999 and unbelievably was told “we will send an ambulance but because it’s not life threatening it could be a long wait” .

He also rang the MS clinic but they told him that they have no power to admit her as it’s only her GP (who still hadn’t rang back) could admit her or the ambulance, (that had still not arrived) .

In despair he rang social services they also tried to get hold of her GP but gain no immediate joy.

Finally around 6pm the GP rang them but could not call until later to see my sister as she (GP) was covering 3 separate areas on her own !!

9.30pm Friday night my sister was admitted to hospital, she had to wait until 3.00am in the back of an ambulance until they found a bed !!

So anyway at the moment she’s in hospital, not very good at all, but at least she’s there !

One of the doctors at the hospital thinks she could have had a relapse on top of the one she had just 8 weeks ago, they are arranging an MRI, and are also trying to deal with all the other symptoms brought on by this awful relapse.

And I get so annoyed when GP’s do not understand how awful a relapse can get, and this one is particularly bad.

the NHS is in a shocking state.

not the fault of the doctors and nurses but the fat cats in parliament.

it must have been awful for you and your brother in law.

your poor sister has really been through the mill.

sending healing thoughts

carole x

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This sounds utterly dreadful. I am so sorry for your sister and for the whole family. What a very frightening time.

I had a terrible relapse 6 years ago that meant I spent 2 weeks in hospital plus 6 weeks in a rehab facility. It involved my entire body below the waist becoming more or less paralysed. I couldn’t move either leg, let alone stand or walk. The relapse came on within 3 days. I was already incapable of opening my bowels and could only empty my bladder with ISC.

After IV steroids, I remember being able to wiggle the toes on my left foot slightly. I gradually regained some ability to move my legs. I had a lot of physio and made some improvements, but I’ve not really been able to walk since then.

I do recall one moment when the reality of my situation hit me and I started crying. I couldn’t stop, it was all so sudden and all encompassing.

Your sister has all my sympathy. It is a very frightening situation. And as you say, the fact that consultants don’t work at weekends doesn’t help at all. Neither does the fact that GPs are a bit clueless.

I hope that tomorrow she gets some help, maybe some steroids started, an MRI, and some improvements as soon as possible.

Sue

Thanks Sue & Carole. One of my biggest fears is that I seem to be following the same path as my sister. She was late 40’s when diagnosed I was 49, she initially had problems with her left arm and leg, same with me, its usually her mobility that is/was an issue that would fluctuate, just like me. If I look back at what she was like 4 years ago I would estimate I’m at the exact same level now, it’s like I’m following the same path with the same symptoms ?

But the question is, are you on a DMD? If not, maybe you should be. If you don’t fit the criteria, you might still be able to get on one if you talk to your neurologist about your sister and your worry that you are following the same pattern. There are sometimes ways of circumventing the criteria on certain grounds.

In your place, the only way you can feel more comfortable about the future is surely to take all possible steps to avoid disabling relapses.

Obviously you won’t necessarily follow the same disease course, but I can see why you worry that you might.

Sue

No Sue I’m not on DMD’s.

I’ve asked the question in the past, and get the same answer, you need to have a certain number of relapses within a certain time t meet the criteria.

My neuro thinks I’ve possibly had 1 relapse in 5 years ( about 8 weeks ago), but when I look back on my sisters pattern she more or less went about the same length of time, 1 relapse in about 4 or 5 years, then perhaps another one a few years later, then nothing for ages, but within this last 12 months she’s had 2, the last one being the worse.

I think I’ll do as you suggest though ?

I’ll ask to speak to the neuro and explain my concerns.

Oddly when I had my follow up last week after being on steroids for my relapse, my sister was in with the same neuro half hour before me, so he obviously knows both our family MS history, but he never mentions her to me, or me to her !

Patient confidentiality I guess.

Hi

I’ve just found the NICE ‘Pathways’ Guidance for Disease Modifying Therapies: https://pathways.nice.org.uk/pathways/multiple-sclerosis/disease-modifying-therapies-for-multiple-sclerosis.pdf

In particular this seems to apply:

“The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.” (Page 9)

So, while the guidance states that 2 relapses within 2 years means you qualify for DMDs, it looks to me as though the neurologist could apply his discretion and given your sisters disease pattern, could make a decision outwith the guidelines and prescribe a DMD for you.

I imagine you have to tread quite carefully with your neuro, he can’t treat one patient based on the experience of another, but he could potentially base his decision making relating to a patient(ie you)s familial preponderance towards initially mild MS having the possibility of becoming very active later. I know this would be based on just one member of your family but it’s worth a go.

You haven’t said whether your cousin has had anything like a similar pattern (unless you have and my shocking memory is at fault!). But in a way that would probably be irrelevant because of the distance of the relationship. Unless that is, she’s had anything like a similar progress.

Sue

Jactac, I’m currently querying dmd with my neuro. I had a very fraught and tense conversation with my ms nurse last week. I just don’t understand (no one has explained to me) why I’m not been offered dmd. I meet the criteria, well the ABN recommendations. Ie one relapse and a separate mri activity in less than 2 years. I was in work when my MS nurse phoned me, I have no idea how long I was on the phone for, I was rather taken aback that she called on my works number ( I have given her this as reception is so crap where I am but I have asked that my mobile be the first point of call. Maybe she had so much on she forgot). Anyhow, not sure how much my work colleagues overheard but I got to the point I was so upset that I started crying and my hands were shaking. Anyhow, I think I got my views across. But it was a very stressful experience, I really don’t need this as work is extremely stressful by itself. Phone call on Friday from ms nurse. I’m going to the relapse clinic and the neuro will on my next appointment go through the decisions with me. I feel so much better, that they have listened to me. I just want an explanation and to understand. It really feels like you are swimming against the tide all the time. My dad says I’m trying to take two steps at a time. My mum put him in his place. All we really want is to be respected and to have reasoned explanations. So all I can say to you at the moment is, tell your neuro how you feel, your fears, they are very real and shouldn’t be dismissed. I have them as well. After all we just want the best for ourselves. We are trying to understand this illness and to give ourselves the best chance. You, we all, at least, in my opinion deserve to understand the decision making process in our care. This is not the same as thinking you know better than your neuro, it’s about understanding.

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To be honest, I think the NICE criteria is crap. Two relapses? Why? Who the F decided that was the standard? Some people have more risk of relapses and disability than others. But we don’t always understand who those people are. So why doesn’t a person diagnosed with MS (or CIS come to that) qualify for DMDs if they want to take them? Accepting the risks that go along with taking any drugs that is.

I think if you want DMDs, and are willing to take one of the full range of DMDs (maybe excluding the ones that are currently reserved for very active MS, or maybe not), then you should have them.

And I say this as someone who is quite severely disabled because of the lack of DMDs (in my case mostly due to side effects rather than not qualifying for them).

I would prefer that everyone who is diagnosed with MS and is initially at least, not diagnosed with progressive MS, gets the option of taking a DMD. Obviously Ocrelizumab should also be approved by NICE for people with SP and PP, should they be capable and willing to accept the potential side effects.

But that’s just my opinion.

Best of luck to all you who currently are fighting to be given a decent DMD.

Sue

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Thank you so. Exactly my thoughts. I explained to my ms nurse that there seemed to be a lack of logic. I’m an Engineer and I think logic. So, if the neuro can’t tell me how I will progress and I meet the criteria why has he decided not to offer a dmd. She stated patient safety and side effects. I said I appreciated this, but from all the literature copoxone seemed to be the least risky. She said it only reduced relapses by 30%, I said that’s better than nothing. She said that they have to think of patient safety, so I asked what are the side effects of copoxone. Apparently palpitations. Think I could live with that as opposed to losing my eye sight. Then she mentioned ongoing blood tests. This was news to me for copoxone as the MS Society and MS Trust literature say that copoxone doesn’t need blood tests. Apparently there is one at one month, then 3 months then 6 months. I said that’s a good health check then. I said I want to try and avoid a serious relapse, I personally include ON as serious. The ms nurse stated that relapses generally only last up to 7 weeks, but that’s still 7 weeks of your live with the risk of residual disability and no knowing how severe that will be and the ongoing effect to your employment. In any case last time it took I thing about a year for my sight, including the colour contrast to get pretty much back to where it was, but the mri shows I’ve permanent damage on the optic nerve. I said I was frustrated that no one had even discussed treatment with me, just a decision taken without my involvement, with no input. I explained I live by myself, ie I have no one else to pay the mortgage, no one at home to help if I did become incapacitated. I said I want to try and give myself the best chance and felt I wasn’t been given that option. Hopefully, it looks like they have taken on board my comments and I’m hoping I will at least get an explanation. I can’t work out if it’s down to money, but if you fulfil the criteria I thought that didn’t come into it. I’ll keep people posted. But, I’ve learnt you really to be assertive to get answers.

Hello Is there any way you can change neuros? This all sounds so unfair. When I was diagnosed (after nothing worse than a few weeks numb toes (not painful or disabling - just odd) and felt my world was ending, the prospect of DMDs gave me hope. My initial MRI was March 2016. This showed both “active” lesions (enhanced with contrast) and old ones in a number of spots - which my neuro too to meet the dissemination in space and time test to label me with RRMS. My toes were fixed with steroids quite quickly. A follow on MRI in June showed 1 new lesion (and also signs that some of the older lesions had improved/ were less pronounced). My neuro used this to call my RRMS “active” and sign me off for lemtrada (I’m 7 months post R2). I’d had an episode of vertigo in 2015 which was diagnosed as BPPV (inner ear issue) and seemed to be fixed by the treatment for that - but my neuro was prepared to add that to the weight of my case for lemtrada (as I was very clear this was my treatment of choice - and that I understood the risk/ benefit analysis). I’ve had no further issues with Ms or from treatment (although admittedly as I’m only 2 years diagnosed it is still early days for me). From the lemtrada board, my story is. Y no means unusual so there are neuros out there prepared to support a more aggressive approach to accessing treatment. Really wishing you and your sister all the best. It must be terrifying for her and you. Xxx

on another thread there is a reference to ‘conning’ the neuro. Maybe not advisable! But what about the neuros who are shafting us - not giving us the chance to have a dmd when we patently meet the criterion (see a number of pertinent messages on other recent threads.) How many people are wrongly classified (deliberately??)and therefore miss out.

I’ve rang the clinic earlier today and left a message asking them to contact me.

A little update on my sister.

She obviously still in hospital, the neuro hadn’t been to see her when I rang earlier and that was 3pm, her husband said she’s a bit calmer in herself but I guess thats because they are probably pumping her full of antidepressants ?

Apparently she’s stopped eating, but I’m not sure if this down to her having problems eating due to the drop mouth or she’s decided to stop eating ?

I’ll try to find out later when I go up for a visit. I think she’s already been told that the CANNOT have another dose o steroids because it’s only just over 8 weeks since her last dose, so I really do not know what the treatment is when you relapse to this level ?

I’d like to thank you all for you thoughts, advice and just taking the time to listen .

Thank you .

hoping today will see an improvement for your sister xxx

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Update on sister.

MRI shows more lesions, on top of the ones that were new on last scan 8 weeks ago, she has been put onto an IV steroid drip.

This confused me a bit because I thought you couldn’t have steroids again so soon after just having them, ( she was put on oral steroids about 3 months ago when she had a relapse).

She will also be starting DMD’s, which in regards to going onto DMD’s, I feel it always seems to be bit of an after thought !

Damage is already done now, so to speak !

Hi

Glad to hear the update. It’s not that you can’t have steroids so soon, it’s more that you shouldn’t have too many courses. These days they suggest not more than 3 courses in a year. IV steroids are generally (imo) more effective than oral. Plus, the sooner they are started after a relapse the better. When I had my big nasty relapse 6 years ago, the IV steroids were pretty effective. From being unable to feel or move anything below the waist, I still remember being able to wiggle my left big toe within about a week. And proudly showing it off. (‘Look what I can do!’)

It’s not a case of DMDs are too late, the damage is done, she will hopefully have some / complete remission from this relapse. Fighting off more relapses is the key.

Hopefully they’ll put her on Tysabri or another highly effective drug. In the main, Tysabri doesn’t have too many side effects, so in her position, I’d be angling for that. It’s only after 2 years if you are JCV+ and in a high risk band that PML is possible. There are other side effects possible. I had highly elevated liver enzymes (aka hepatitis) from it. But that’s easily got over. It’s just a disappointment that I couldn’t stay on it.

And in your position, you should definitely be asking to get on a decent DMD. There is no real reason why you should follow your sisters disease pattern, but just in case.

Sue

Hi Jactac, I really hope things get better for your sister. Thinking of you and your sister.

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Thank you so much.

Plasma exchange is a way to “clean” your blood. It works like kidney dialysis.

People with some forms of multiple sclerosis have certain proteins that are attacking their own body. When you take out the plasma, you get rid of those proteins, and symptoms may get better.

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hiya

words fail me-this was so upsetting to read.

i hope your sis gets the attention and help that she needs.

ellie

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