Feeling like it’s all falling apart

Everyday living
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I was diagnosed with RRMS 25 years ago and until 2016, had experienced relapses which cleared over 3-4 months. Then I had a bad relapse which took my right leg away completely from my brain. I had my first course of steroids and again fully recovered in 3 months. I started Tecfidera and although it really heats me up, I didn’t have a relapse in 2017, which seemed to break the annual pattern I had experienced for 4 years previously.

then I started to struggle walking. In June this year, I caved in and started using a stick. By August that wasn’t enough so I bought a rollator with a seat and moved around ok. Now I am really struggling to walk very far, even with the frame.

I have had little help from my GP, although he prescribed amitryptiline to help me sleep and Baclofen to help with the leg cramps. Sleeping is very difficult as I get pains in my hips, thighs and front of my lower legs. I rarely get more than 6 hours sleep most nights and that’s on the amitryptiline and Zapain. All night long I rub BioFreeze and/or Voltarol over my legs to try and get some relief but it is so painful.

Getting up in the morning is a true challenge too as I feel like the tin man trying to walk to the loo! Add to that the fact that I live in a first floor flat and have to brace myself for the 2 flights of stairs down to get out and then walk round to my car with my frame. Once I am in the car, it is fine but then I have the same performance getting out at work.

My Gp referred me to the musculoskeletal clinic and I visited the physio 3 times before he conceded defeat and referred me to the pain management team but now I have to wait till the end of November to see them.

My MS nurse has now referred me to the neurological physio team but I have no date for an appointment yet. She is convinced that MS is causing my mobility issues and pain so I am, concluding that I am now experiencing SPMS. I have not had a relapse but my body is giving up and I just don’t know what to do now. Where do I go to get advice? I have an appointment with my neurologist in 3 weeks but he is not an easy man to deal with.

I apologise for the long essay but I need help. Do other people with SPMS get better or is this it, I am permanently disabled now? I understand everyone is different but I would like to hear from other people. I think I need to prepare myself for a lifestyle change but am I being over dramatic? It’s so hard, not being able to find anyone who understands what is happening to me, to help guide me through this. I know it’s not a relapse, I’ve had lots over 25 years and this is completely new to me.

Any advice will be most welcome

Karen

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Hi Karen,

I have PPMS since 2010 but I have got a lot of help from neurophysiotherapists. They have been able to retrain me to accomplish specific activities by concentrating on specific muscle groups.

I still have have difficultly walking, but they’ve been successful with helping me to get out of bed easily and walk upstairs.

Regards,

Anthony

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Hi Karen

It’s really difficult to work out whether you are still RR or SP. One thing is that because you’re on Tecfidera, you probably wouldn’t have any relapses.

I’ve been wondering ‘am I now SP’ for about 10 years on and off as I have become gradually more and more disabled. (And when I first started wondering this, I definitely wasn’t SP.) I’ve now not had a relapse proper for about 3 or 4 years, so it was decided by my neurologist about 2 years ago, that I am ‘in a more progressive phase of the disease’ (as he put it).

Then I had a proper relapse a few weeks ago, following on from some more sensory symptoms that could also have been a smaller relapse. My left leg which normally works just about OK completely stopped working at all as did my left hand. Both massively improved with steroids. So I arranged for an MRI, and got a letter the other day saying I do have a couple of new small enhancing lesions. These can only come about if there is current inflammatory activity, ie a relapse. So I am now either SPMS with relapses (or what could be labelled PRMS) or still RRMS. So I’m now waiting for an appointment with the neurologist to see what, if anything, can be done.

Meanwhile I am more and more disabled. And this pattern of increased disability has continued since a ‘big bang’ of a huge relapse 6 years ago. Some of my increased disability is definitely caused by decreased muscle tone rather than neurological in origin. Which isn’t surprising given that the neurological deficits have themselves caused me to be less active, plus I’ve had 2 separate abdominal surgeries causing more core weakness.

So for me, it’s both neurological and muscular weakness that have combined to give me quite severe disability.

But I don’t think anyone is going to be able to decide whether I am PR or RR. I’m no longer a candidate (I don’t think) for any DMDs because of serious side effects from 3 out of 4 DMDs in the past. So I’m just waiting for the neurologists appointment to discuss all of this.

It’s a bugger this MS stuff. Doesn’t behave in a sensible way at all. Once you get your head round where you are with the disease, it goes and changes it’s mind.

So, I don’t really have any advice, except to keep taking the Tecfidera. It could be stopping further relapses. Maybe the neurological physio will be able to help strengthen your muscles. Or perhaps a review of your current drug regimen would be a good idea. Baclofen could be making your legs weaker than they might otherwise be. Perhaps you could try taking magnesium or using magnesium oil and cut down on the Baclofen?? I take magnesium glycinate, but probably won’t carry on when I run out as I still have spasms and take the same amount of Baclofen!! Or try swapping to a different drug? Dantrium maybe? Is there a neurological rehabilitation specialist doctor in your area to whom you could be referred? I see a wonderful rehab specialist and he is brilliant at tinkering with drugs to get the best out of them, or referring me to other services.

Best of luck.

Sue

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Hi Sue,

Thank you for your message. I am now taking Gabapentin for the nerve pains, just taken my 3rd pill for the first time to get me up to 900mg a day. It has helped with my leg pains but hasn’t got rid of them throughout the night so I still wake up and have to try and find a position which doesn’t hurt so much.

I am struggling mentally though. I find out daily that I can no longer do things and that MS is stealing my mobility. I went to the cinema today, sat in the front row so I could keep my rollator with me and realised at the end that I was stuck in the seat because it was very low. I managed eventually but the fact that I now can’t go to the cinema has hit me another blow. I can see me trapped in one room, unable to get out because my brain and body don’t talk to each other any more. And it terrifies me!

What do I do for emotional support? How do I adjust to the fact that I am now disabled forever? No relief, this is it and it’s only going to get worse. I have had 23 years of easy street and now it has crept upon me and stripped me of my independence. I watch people just get up and stroll around and my heart bleeds in envy. Just such a simple everyday movement and one that is so difficult to me. I want to scream at the unfairness of it all but it won’t achieve anything. How do people adjust to this? No one has offered me any help with my emotions and it shouldn’t be that way, surely? Is there no one I can talk to about all these emotions roiling through me?

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Hello

It’s a pretty unpleasant wake up call, to have been OK for years and then suddenly be faced with proper disability.

You could see your GP and ask for some help, perhaps referral to a counsellor of some kind?

I know what you mean about envying people just walking with no thought. Sometimes I’ll be on the seafront with my husband pushing my wheelchair and I watch the feet walking in front on me and I literally hate the fact that they can just amble along with no understanding of how wonderful the human body is when it works properly. It is utterly unfair that we’ve been struck by MS.

We do adjust to it, we have no choice. I hope you can find someone to talk to. There’s always the MS Helpline, the number is 0808 800 8000.

Best of luck.

Sue