Raised so far
"I was diagnosed with MS at 33 years old in April 2021 but had my first relapse in October of the previous year.
During my relapse I had: extreme fatigue; lost sensation and had reduced motor skills in both my hands; had weakness down my left arm; my stomach stopped moving; lost sensation in the skin over my torso and had Lhehrmitte's sign where, when I bent my neck numbness spread to the base of my spine. These scary and invisible symptoms reduced over a week but the arm weakness, fatigue, altered hand sensation and Lhehrmitte's sign lasted for another four months.
To be diagnosed with MS at the time, a single MRI with lesions (which they found two of in my spinal cord and multiple in my brain) was not enough, you needed to have signs of two episodes on MRI's separated in time. MSNZ has campaigned to get this changed. Telling someone they need further irreversible damage to their spinal cord or brain before they can start treatment, is something I’m happy others will no longer have to go through. At the time I had to go on antidepressants (depression is 3 x more common in people with MS than the general population) as with no diagnosis, there was no follow up support or guidance given.
Tysabri infusions, which take three hours every six weeks, have greatly reduced my symptoms. Leaving me with just altered sensation on one thumb, intercostal muscle pain (MS hug), which I manage really well with yoga and exercise, and fatigue, which has reduced month on month since starting treatment.
This means I am still able to work full time as a mixed animal vet and feel nothing is off the cards. It sounds like my disease is unlikely to progress. It is amazing how far treatment and knowledge about relapsing remitting MS has come in the last 10 years, we are very lucky!"
"From my experience: advocate for your health, educate yourself about your condition and never doubt what you feel is going on with your body as early diagnosis gives options.
Please support MS Rotorua so they can connect people with MS, educate us and others about MS, campaign for access to treatments and help people with more severe symptoms than me access health and disability support."
We need your support to be able to continue to assist those with Multiple Sclerosis in Rotorua and Taupo to live as full a life as possible with their condition.
Multiple Sclerosis Rotorua offers a range of services to people affected by Multiple Sclerosis and their whanau. Our Field Worker is directly available to provide support including home visits, referrals to appropriate health services and to a range of other non-health services and support groups.
Our aim is to ensure all our members feel connected and receive direct contact with our Field Worker for support upon any MS issues that may arise.
Community Advisor Services
Field Worker: firstname.lastname@example.org
A big thank you to our Supporters
The real heroes who are kindly helping us achieve our goal