Tarika, who was diagnosed with MS only a few months ago, has since reached out to a network of support through MS Plus. She has since received tailored advice from our MS nurses, to help her manage her symptoms and medications.
‘You can tell Jane has spoken to a lot of MS patients. She’s deeply knowledgeable but also how she explains things has really resonated with me. Some of the things she’s said have really stuck with me and helped me long after we have spoken.’
‘My first question for Jane was about a symptom called Lhermittes — sometimes referred to as the ‘barber’s chair phenomenon’. Basically, when you crane your neck down you get an electric shock feeling, or for me it was more like a deeply uncomfortable sensation in my lower back,’ Tarika says.
‘At the time, because so many strange things were happening as part of my broader relapse, I had no idea if this was something else or related to my MS.
‘Jane reassured me it was in fact part of my MS. She said it was unlikely I would have to live with the symptom forever, that it would likely fade, but if it didn’t there are ways to work around it.’
Tarika also received an MS overview from Jane, who walked her through the changes she might expect in her body during relapses.
‘Because I was so new to MS, she gave me a bit of an “MS 101”, which helped to give me a sense of how to think about the changes happening in my body and what to expect and to come to terms with it all.’
Tarika later began experiencing slight tingling symptoms on her left side and began to worry this meant she had developed a new lesion.
‘I called MS Nurse Advisors again to ask, “is this a bad sign, is it spreading”?’
‘Jane was wonderful again and explained the definition of a relapse to me, and then asked if I felt like this is what I was experiencing. She explained sometimes despite where lesions may be located in the brain, symptoms aren’t often aligned perfectly to one side of the body, so symptoms may be experienced in different areas and different ways but that it doesn’t necessarily mean you are getting worse or that this is a new episode or relapse.
‘She was correct. In my subsequent MRI nothing new came up.’
Tarika later called again with questions about her MS medications.
‘Jane is an absolute legend. I’ve spoken to her a few times and each time she has been a massive help, not just talking me through my questions but giving me some no-nonsense advice and much-needed perspective, which was so valuable early on when I didn’t know what was happening with my body.’
‘I came to understand from chatting with Jane and from my own experiences that with MS you just experience weird quirks to your body and they can’t always be neatly categorised or linked to a specific cause or chain of events.’
To have a chat with an MS nurse, phone Plus Connect 1800 042 138 or email [email protected]
