PPMS - confirmed in May - will my balance and mobility continue to worsen?

I first posted on here last September, when I was worried that I had MS, although I thought I just had a bad knee and was waiting for a TKR. My Ortho locum thought that my gait was neurological, and I had a MRI done. The GP told me that he didn’t think I had MS, and the the MRI was negative. It turns out when I finally saw a neurologist, they did the MRI on the spine, instead of the brain. My mobility and balance were bad enough that I realised that I could not drive my automatic car safely. I was off work for 6 months, from last September. I had the car taken away and modified with hand controls. I watched the video how to use them, but I must admit I expected the lady who dropped the car off to demo them. How difficult can it be I thought? So out I went…it was terrifying! I had a bump the first week - nothing to do with the hand controls, I just didn’t see the lady in Tesco’s car park!

I had a MRI on my brain in January 2022. The neurologist simply stated that my MRI showed features consistent with MS, referred me to the MS team in Swansea, and sent a copy to my GP. After waiting for 2 weeks, in the end the GP told me that it looked like MS. He didn’t want to be the bearer of bad news, but it was obvious this was the only way that I would find out. In April it was apparent that I had slipped through the cracks, with me living in Aberystwyth, and the MS team being based in Swansea. In desperation, I contacted the MS society in Swansea, to ask them if they had an email for the health board. I am a scientist working in an NHS laboratory, and I wanted to go back to work. The health board replied in a couple of days, and I saw the MS team the next week. I was diagnosed with PPMS on 11th May.

I seem to have steadily gotten worse since last September. I used a walking stick then, but rely on my mobility scooter now. I use two walking sticks, when I can’t use the scooter, and even use a walking stick inside the house downstairs. Upstairs it’s a case of wall and furniture surfing.

I have a good job, and with the support of my employers, Public Health Wales, and access to work, an electric power chair has been purchased, so that I can return to the laboratory. In order to get right up to the bench, and also be wipeable, the power chair is costing £7K. As I’m only using for work, PHW pay the majority, with the excess paid by access to work. I asked for a car boot hoist to lift my mobility scooter. It cost £2.5K, but they know that I will be using it outside of work, to go shopping etc, so charged me £600, which I thought was reasonable.

I’ve been back working, after a phased return, for 3 months now, working from home. I’m still waiting for the delivery of the power chair - there’s a shortage of chips used in the controllers. Delivery expected hopefully end of July.

I’m desperate to return to work, but my worry is if i carry on deteriorating as quickly as I have been, will I be able to get out of bed by the time I get the chair?!

I used to be a keen cyclist, but haven’t really been able to exercise for some time. I sold all my bikes because of my balance, but I was slowly getting around to cycling for 20 minutes at a time on a spin bike at home. Then they found my BP was high. It’s taken 3 months to sort out the medication.

So, I want to go cycling again - I’ve been toying with buying a trike! At this moment in time, I haven’t been on one, so don’t know if it’s a viable idea. I’m travelling all the way to York this weekend to try one out! They are expensive, so I want to make sure I can ride it okay, and I can get it in and out of my car with the mobility scooter. But I feel I really need things to look forward to. I suppose my biggest worry with my worsening symptoms is that if I end up buying one, will I be able to ride it in a years time? If I can get outside and exercise it will be really fantastic, but I don’t want to waste money if I can only use it for a short while. Fingers crossed!

Jeff

P.S. The only time that I feel normal is when I’m driving! A couple of weeks after I was diagnosed I drove from Aberystwyth to Aberdeen, and got the overnight ferry to Shetland. We did 1400 miles in all and had a fantastic time. I’ve worked there quite a few times, in the hospital, so this was my 7th visit, but the first time I’ve seen Orca. I made the mistake of booking an apartment, which was uo 3 fights of stairs, which nearly killed me, and my poor wife, who had to carry everything up and downstairs! But then again, if it wasn’t so high and overlooking Lerwick Harbour, we wouldn’t have seen them at 9pm on our last night! Lots of puffins too!

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Hi Jeff
The short answer is Yes, it will continue to worsen. I’m in a similar position.

If the Neuro’s are having trouble finding your disease on MRI’s it’s possible you have “smouldering MS” where lesion damage is historic, yet symptoms continue to worsen. Unfortunately, current treatment of PPMS with ocrelizumab is only available to sufferers who can show differential damage from one MRI to the next.
Graeme

Thanks Graeme

I spoke to a nurse recently and said things had gotten worse - whe said that she would pass this onto the Cons and see if I can’t have another MRI before next January. Then if it’s worse maybe treatment would be considered? I don’t even know how effective ocrelizumab is - I suppose it varies in different patients?

Jeff

Hi Jeff
Sorry to hear of your experience. Falling through cracks is no joke but happens to more of us than you think.

We all progress at different rates. Nobody can tell you what your circumstances will be in a year or a month. Your ms appears to be progressing quite rapidly.

It sounds as if cycling is one of your great pleasures in life. If balance is affecting your cycling would you consider a trike? You could even consider a battery backup.

Where I live there are many cyclists and I’ve seen trikes and they look very stable. Not for everyone I know but I’ve found that finding new ways to do what I enjoy is the way to cope.

Take care
Cath

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Hi Jeff
It might be worth investigating “Smouldering” MS, as you may fit some of the criteria. Rather than me try to describe it, read up on the inestimable “[Prof G]” (MS-Selfie).

He introduces the idea of NEIDA (no evident inflammatory disease activity) which means that while a MS diagnosis can be made, the Doctors can’t find it or its progression using usual methods. My original post was gloomy but that’s because I am in the same boat - original lesions showing, no new ones yet my symptoms are steadily worsening. A form of PPMS, there is currently no treatment other than palliative care. The only recognised treatment for PPMS, Ocrelizumab, is apparently not effective on NEIDA cases.

Have a read of the MS-Selfie articles (Archive - Prof G's MS-Selfie)

In fact, read all of Prof G’s articles - he is surely the best commentator on the state of MS treatment and ongoing research in the world. It may help you identify where you fit into the MS scene.

Hi Cath
We drove from Aberystwyth to York at the weekend to have a go on an electric assisted trike. It was weird getting used to it, but at least I could ride it. I had problems getting my left foot to behave, but I’ve put a deposit down on one. We’'d have some logistics to sort out, with where to ride it, and how to get it in and out of the car, especially with the mobility scooter in there, but I feel it’s important to do my best to make this work, and enjoy it! There is a worry about spending so much and if I’ll be able to ride it ok. I’m going to step up cycling at home with my spin bike now that my BP seems sorted, to build up my legs. It was strange when I first go on the trike, it was almost like I couldn’t rotate the pedals right around - like forgetting how to ride a bike.

Has anyone adapted their car hoists to lift a bike into the car?

Regards

Jeff