Neck spasms with PPMS

I have been diagnosed with PPMS since May 2022. I live in a rural area and have been back to work full-time since February 2022, after 6 months off sick. I am lucky that I work for the NHS and managed to get an electric wheelchair from access to work, paid by a combination of my employer and ATW It’s a very expensive piece of kit – needing to be height adjustable to allow me to access laboratory benches of varying heights. I have been a scientist for 45 years now, and really enjoy my job, especially reading culture plates and training people. I’m 62, and not ready to retire just yet! Besides, who can afford to if they can still work? I use a mobility scooter to get from my car to the lab. ATW also helped me fund a car boot hoist – I paid a contribution because I obviously use this outside of work, shopping etc. Because the chair stays in work and is only used there, I did not have to contribute. The chair is the property of my employer, and they pay for its servicing. In fact, its first service is tomorrow! I work in the hospital from 08:00 to 13:00, go home for lunch, then work at home from 14:00 to 16:30. I can’t access the lab tearoom, and the hospital canteen is a long way, so at least I can eat at home, plus I have a lot of admin and quality work that I can do at home. It works well.

I live 2.5 hours from the hospital team managing my MS, and I am enrolled in a clinical trial there. I have hand controls on my car, which is essential because my wife does not drive. Initially, using hand controls was terrifying, but I have been using them since September 2021, and they are second nature now. Although the only time I feel normal is when I’m driving, it is tiring, and I tend to stay overnight when I visit the Research Team for assessment, and travel back the next day.

My main problems are my balance and walking. My arthritic knee is very painful at times, and I rely on my mobility scooter, but can get around with difficulty with two walking sticks or a rollator. I use the rollator around the house, and to get to and from the car. I had no other real problems until last week… I woke on Thursday in real pain with my neck and assumed that I had cricked my neck overnight. The pain was immense as I walked, and my head moved. I couldn’t drive, so couldn’t go to work and paracetamol didn’t help at all. I am not allowed to use ibuprofen because they are contraindicated by the clinical trial, so contacted the GP, who prescribed codeine. Once I got the green light from the Research Team, I used them, but they did not help at all. I contacted the MS team and the Research team, especially as I needed an MRI on the Monday as part of the trial. More important to me than attending the MRI and the drug trial was the worry over driving per se, my independence, and work. I resorted to Google my symptoms! I had never really had any spasms apart from my twitching legs. It seemed the neck pain and spasms were common in MS. Why nobody mentioned it to me was disappointing, but I went to see my GP and asked about muscle relaxants. She prescribed baclofen, and I had a good couple of days.

I cancelled the MRI and the hotel, although I have a Research visit tomorrow. I went for a short drive yesterday, and I will drive further and longer today. I have a 2.5-hour drive starting at 06:00 tomorrow. If I can drive safely, I will attend, and I have already paid for the hotel. The day afterwards I will leave at 06:00 and get back into work at 10:00. I am lucky that I can have disability days to go to the Research Unit, and travel back the next day. I can still feel that my neck is still not right, but deep heat helps, and I tend to move my head cautiously when I can. I will have to be more cautious driving, especially at junctions, but I had already changed my driving to consider my disability. I get the impression that I will be wary of neck spasms for some time, but anecdotal accounts suggest it might be periodic. I am driving to the Outer Hebrides, in 3 weeks’ time, so I certainly hope so! We are stopping for 3 nights both ways before we get the ferry, limiting the amount of driving each day. I drove to Shetland this February, and did so last May, so we know what’s involved. Once I’m out of Wales, the services are very regular, so my many stops for peeing are manageable. After a couple of days being distraught about not being able to drive, and losing my holiday, I am feeling a lot more positive thanks to The Power of Google!