Being diagnosed with MS during lockdown

Receiving a diagnosis of MS is never easy. Getting your head around the news that you’ve got a lifelong condition can leave you feeling a whole range of powerful emotions: grief, sadness, anger, shock, denial, uncertainty. It will take time for you to work through these feelings in your own time, and in your own way. But being told you have MS in these extraordinary times - mostly likely over the phone – could mean a whole new level of uncertainty and worry to deal with. Here we speak to Frances about her experience of being diagnosed during lockdown,  and hear the stories of others who have been diagnosed in these uncertain times. We also provide some tips to help you come to terms with your diagnosis. 

I am a 56-year-old mother of two and grandmother to five. I work full time as a supervisor in an independent deli style shop in a small market town. I have always felt myself to be an active type of person, having worked outside most of my life with horses and gundogs.

What I now know to be MS symptoms started around five to six years ago when I was out with my dogs. I started to develop walking issues; my leg felt stiff and I couldn't move very well. Around this time, my back started to ache too, so I saw a doctor who suggested a gel rub and off I went. 

I had no real improvement and found myself tripping occasionally, so I went back to my GP who put me on a local physio programme called Back Track. At the physiotherapists, I mentioned my backache, walking problems and a sort of numbness that I was experiencing, so sciatica was the diagnosis. I also had shoulder issues and that was put down to posture. So I carried on and I next went to see a chiropractor, who helped with my walking, although I still felt I was dragging my leg. I then tried an osteopath who did help with the stiffness in my muscles.

However, by last November, I was so fed up and my walking was getting worse so I went to the GP again. I was again referred to the physio, but this time I got somewhere. She helped my with my walking as I was all over the place, but she knew something wasn't right and sent me back to my GP. When I saw my GP, she said I needed to see a neurologist as all was not well - spinal stenosis was mentioned as a possible diagnosis. My GP got me a fast track appointment with the neurology department at the John Radcliffe hospital in Oxford. That was in January.

When I saw the neurologist, I showed signs of Uhthoff's phenomenon and Lhermitte's sign and he referred me for an MRI scan. Following this, I had a phone call from my neurologist in March to tell me of the diagnosis: it was primary progressive MS. Shortly after, I received a letter about being assessed for suitability for Ocrelizumab. I have not heard anything since then, so now I am just waiting for what happens next. Being diagnosed during lockdown has left me feeling in limbo and I just feel a little lost. One day, I feel fine about the diagnosis and the next day tearful as the retirement my partner and I had planned doesn’t look like it will happen as we had hoped. I am still working full time, as the shop I work in is food retail and therefore essential, so just trying to carry on as normal.

We’ve heard from many people like Frances who have been diagnosed with MS during lockdown, and who are feeling a little lost as they try to come to terms with their diagnosis. With many MS nurses being redeployed, you may be struggling to get hold of your nurse to get answers to the questions that have been playing on your mind. Or you may feel like you don’t have an outlet to explore everything you’re going through. Gemma from our Information Team offers some tips to help.

When you feel ready, take some time to learn about MS from reliable sources. Understanding exactly what MS is and how it’s treated can help you come to terms with your diagnosis. We have lots of resources on our website and in print. You can also contact our enquiry service where we'll try to answer any questions you may have about MS.

Most people will have lots of questions after diagnosis. You may not have had time to ask them all when you were diagnosed. Now might be a good time to start making a note of questions that are bothering you, so you’ve got them ready for your next appointment – even if you don’t know when that’ll be just yet. Read our tips for making the most of appointments.

MS is unpredictable and it can be hard living with that sense of uncertainty about the future. Focusing on the things you can control – rather than the “what ifs...?” – can provide some reassurance. For instance, you might not know when you'll next see your MS nurse, but you can focus on taking care of your physical health in the meantime by eating healthily and keeping as active as you can. Those things are in your control.

It’s easy to let worries and anxieties take over at this difficult time. Make time to do activities that you enjoy and allow you to “shut off” from these feelings in some way. You could read a book, do some gardening, walk the dog, do something creative, or learn a completely new skill!

It’s completely normal to go through a range of feelings after diagnosis. Talking about them with someone can help. Reach out to friends and family members for a chat – most people are happy to offer a listening ear, even if that has to be over the phone right now. There are online support groups too. 

If you’re really struggling with MS symptoms and you can’t get in touch with your MS team, then you can contact your GP instead. They’re not experts in MS but they can support you with symptom management. Remember, health services are still running during the coronavirus outbreak; they may just be running a little differently. Don't feel like you can’t ask for help because of everything else that’s going on right now. 

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