No One Knows What Being Diagnosed with Multiple Sclerosis Is Like, So Maintain A Can-Do Attitude
Aug 17, 2018 • 9 comments
Trish, a 55-year-old woman, is diagnosed with Multiple Sclerosis, Lupus, and other conditions, but is determined to maintain a can-do attitude despite being faced with progressive and incurable conditions. She offers an invaluable insight into her journey with Multiple Sclerosis and recommends those diagnosed with Multiple Sclerosis to seek out others diagnosed with Multiple Sclerosis as support and to relate to.
Hello LynndMS. Thank you for participating in this testimonial. Could you please introduce yourself in a few words?
Hi, I’m a 55-year-old woman living in an area of the US with one of the highest MS rates in this country. I grew up in a very polluted, industrial area. I think that causes more autoimmune diseases as well as other like various cancers. I have Lupus also with Vasculitis.
How and when were you diagnosed with Multiple Sclerosis?
I was officially diagnosed in October 2011 after July and August 2011 MRI and spinal tap. I was told by my diagnosing doctor that “you’ll never get better and the best you can hope for is not to get worse”. I was also told I’d had it for quite a while and the doctor showed me older lesions and then looking back periods of feeling unwell made sense.
Are you diagnosed with any other conditions?
Lupus, Vasculitis, Dry Eye, GERD, Depression, and Poly Neuropathy.
Do those other conditions affect your Multiple Sclerosis? How so?
The other conditions affect me, such as with Lupus it’s common to run fevers and with a rise in body temperature it exacerbates my MS symptoms. Also, doctors cannot agree which disease is causing my symptoms to worsen (such as, my neuropathy is spreading fast). in my humble opinion it doesn’t matter because neither is curable. The best we can do is manage symptoms.
How did you react when you found out you were diagnosed with Multiple Sclerosis?
I was a little shocked, and afraid initially, but then I had a bold, nothing can stop me attitude. However, stop me it did as I was in the middle of a bad flare.
What rehabilitation/treatments and/or medications have you tried/used for Multiple Sclerosis? To what success?
I was on Copaxone for three years (until I moved and had a doctor tell me I was secondary progressive, and she didn’t think the injections were helping at all) and I tried Tecfidera, but I was allergic to it. I now use high dose biotin and I feel it gives me more energy than I had, even as I’ve progressed somewhat.
Since your diagnosis, have you had to modify/adapt anything in your life due to Multiple Sclerosis?
I lost my career and I am on disability, which alters your life considerably. I was in a second marriage that fell apart. I’ve tried dating, but I gave up after being told more than once the “health issues” were too hard to take.
What is the most difficult thing for you being diagnosed with Multiple Sclerosis? How do you cope with this difficulty?
I’m starting to really slow down and daily tasks are becoming increasingly difficult. Living alone means I have to be very careful about managing myself so I can function to make sure I can get through the day. I have pets (two are older) and it’s become a challenge managing it all. Not working is lonely. I worry for the future as I never want to be dependent at all. No nursing homes.
What are some recommendations or advice you would give to anyone diagnosed with Multiple Sclerosis?
Try and keep the can-do attitude. Try and find others with MS as most people cannot relate to what it’s like living life with this disease.
Do you think support groups and online patient communities and forums help those diagnosed with Multiple Sclerosis and other conditions? How so?
Absolutely. As I stated above .. no one knows what it is like to live with this disease.
No one knows what it's like to live with Multiple Sclerosis, so try and keep a can-do attitude and find others diagnosed with Multiple Sclerosis to identify with.