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Personal Stories

As someone with McArdle disease (GSD5) I remember having symptoms at a very early age, being carried or in a pushchair almost everywhere because I cried when I tried to walk. Being taken to the doctor time and time again and being told I was lazy and unfit and to do more exercise. Even going myself when I was about 15 because I was having so many problems, but still being told the same.

A late diagnosis after damage accumulated

In 1997 I found that I seemed to be getting worse, my arms were hurting more and even walking on the flat my legs hurt so I decided enough was enough and saw my GP, she sent me for a spinal X-ray, but nothing showed up so she told me “There’s nothing wrong, you will just have to live with it.” That made me feel worse because STILL nobody was listening. I decided to see a different doctor who referred me to a neurologist, and in October 1999, at the age of 51, I was finally diagnosed by muscle biopsy and I was so relieved it was like a great weight had been lifted off my shoulders. I hadn’t let my parents know I was going through the tests and when I finally told them, I could sense that they felt so guilty for not listening to me and that it was their fault.

Support from the McArdle Clinic

After diagnosis I had no support until I found the McArdle’s clinic at Oswestry and was so pleased to know I wasn’t alone. I have had great support from Dr. Quinlivan, but unfortunately the McArdle Clinic is now in London. I cannot manage that, whereas when it was Oswestry it was fine for me. It would have been good if the clinic could have been based in Birmingham, so that it was central to everyone in the country.

Marg and her husband John, a great team.

Damage accumulated from heavy manual work

I had such heavy manual jobs all my life I think the damage had been done and by July of 2000 I was needing to use a wheelchair, although I could walk short distances with a tripod walker. These days I have to use my wheelchair more often. I have difficulty in lifting anything like heavy saucepans, which most people would be able to do. We have had our bungalow adapted to suit my needs, my husband is my carer and does most things like vacuuming, cleaning, shopping and cooking.

Better these days

I am so pleased for the people who get diagnosed at a younger age these days. There is so much more information available now and they can be put on the right path before they do the sort of damage that I did. I do my bit to help as an Admin on the Facebook group.