8th May 2024

The road to my diagnosis was a long three years

My MS Diagnosis Campaign

This World MS day we are raising awareness and building solidarity by sharing real experiences MS diagnosis across the globe. It took Yuki three years to receive her MS diagnosis in Japan. The doctor she visited knew little about MS and how to treat it. Yuki had to find more information from others living with MS and moved hospital to get the care she needed. Read her story:

“For three years, I had been suffering from numbness of an unknown cause and I did not know even the name of my condition. My first MS symptoms were numbness on the soles of my feet that lasted 24 hours.

I went to see an orthopedic surgeon for this but the doctor said there was nothing wrong with it. I was given vitamin tablets and that’s it.

My numbness did not heal. Rather, it spread from the soles of my feet to my calves and thighs, and my whole lower body was numb,

I talked to my mother. She did a lot of research for me and thought it might be a neurological problem. I decided to see a neurologist.

At that time, my doctor told me that there was nothing wrong with me. When I insisted that I could not do anything, he asked me if I could get the MRI. I then was told that it was probably the multiple sclerosis. I had the MRI and cerebrospinal fluid test with a lumbar plug at the hospital. Then, a definitive diagnosis was made.

My doctor did not know what multiple sclerosis was and he did not explain it to me at that time, I personally checked and looked it up on my phone, and for the first time. Oh my goodness! I was so shocked.

I thought this numbness may never get better, so I cried on my hospital bed every night. But frankly speaking, I was also relieved to learn the name of the disease in the end as I had been suffering from it very seriously.

The road to my diagnosis was a long 3 years! If I could have been introduced to the right hospital for proper diagnosis and treatment at my first visit, the situation could have been completely different.

Yuki Japan

I did not get proper advice from an MS specialist at the hospital. Regarding relapse prevention medicine, there was no talk at all. I had to find out a lot of information from my fellow MS patients. My fellow MS patients informed me a lot.

Under such situation, I lost my trust in my doctor completely and started to look for another doctor at the other hospital. After searching around many hospitals, I found my current primary care physician and was transferred hospital. Now I am able to get the very latest information from MS specialists at the hospital.”

Yuki from Japan

Support the #MyMSDiagnosis campaign as we work to improve early and accurate diagnosis for everyone living with MS. Together, we are advocating for better training and awareness amongst healthcare professionals.

Our thanks Yuki and the Japan MS Society.  

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