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I was diagnosed with lapsing and remitting MS when I was 56 and now 78 years old. I also had an aneurysm 2 months after my MS diagnosis.

A MyMSTeam Member asked a question 💭
Columbus, NC

Up until age 70 I was able to walk pretty well and even competed in agility with my dogs but slowly slowly I started to have a fear of walking in open spaces almost like a panic attack. Hence no more agility I use a cane but more recently a walker I can walk well holding someone’s hand. I know it’s all in my head but I am so limited and fearful. Could this be a symptom of secondary progressive MS. As far as I know I haven’t had a relapse in over 5 years. Would appreciate any info. Than you

May 9
 · 
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MyMSTeam

What an incredible journey — competing in dog agility at 70 with MS is genuinely impressive! The fear and challenges being described are very real and absolutely worth taking seriously.

The gradual worsening of walking difficulties over time, without clear relapses, is actually a hallmark sign of Secondary Progressive MS Show Full Answer

What an incredible journey — competing in dog agility at 70 with MS is genuinely impressive! The fear and challenges being described are very real and absolutely worth taking seriously.

The gradual worsening of walking difficulties over time, without clear relapses, is actually a hallmark sign of Secondary Progressive MS (SPMS). When RRMS transitions to SPMS, symptoms tend to slowly worsen steadily rather than in distinct flare-ups. Going 5+ years without a relapse while experiencing gradual decline is something worth discussing with a neurologist. The fear of walking in open spaces is not "just in your head" — it's likely connected to real MS-related changes, including:

- Balance issues affecting up to 4 in 5 people with MS
- Impaired coordination (ataxia) causing unsteady gait
- Sensory changes making it harder to feel foot placement
- Muscle weakness reducing confidence while walking

The fact that holding someone's hand helps makes complete sense — it provides sensory feedback and stability that compensates for what MS has affected. Some helpful steps to consider discussing with a care team:

- Ask specifically whether this progression pattern suggests SPMS
- Request a physical therapy referral — therapists can work on balance and build walking confidence
- Explore assistive device options beyond a walker if needed
- Discuss disease-modifying therapies as some can help slow SPMS progression

Please don't minimize these concerns with a doctor — this gradual change in mobility and confidence deserves a thorough evaluation.

May 9

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