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Scared

Hi, I was formally diagnosed with benign MS 3 years ago. My symptoms are getting worse, with balance problems and constant pain in both my legs. I know it sounds weird as I am now 46 years old but I am absolutely terrified of what is to come. I know that in the marriage vows it says in sickness and health but I can’t stop feeling for my wife as she doesn’t deserve this. We are supposed to take long walks however I struggle to walk down the road.

I know I’m sounding bitter and i am sure i will make peace with the situation eventually.

Sorry, just needed to let off steam

Hi, I think all of us have been scared stiff of MS at some point. Sometimes it’s the unknown and at others it’s because of what we do know. Neither is at all helpful. It sounds as if your fear is a mix of what is going to happen to you and how it will affect you marriage. In both cases the key is good communication. It’s important to be able to let your wife know how you feel. You’ll find more support and less scary stuff that way. And don’t forget that this forum is a rich resource of empathy, wisdom and friendship too. A bit like a marriage but with less washing up after meals. Best wishes, Anthony

Hello

‘Benign MS’ shouldn’t really be used as a descriptive term for a variant of MS (imo). Yours doesn’t sound at all benign.

Do you know on what grounds yours was designated as benign?

If you see https://www.mstrust.org.uk/about-ms/what-ms/types-ms the section on Benign MS states that it’s a form of relapsing remitting MS that is characterised by long gaps between mild relapses. Also, that it can only really be diagnosed after about 10 years. Since MS does what it likes, when it likes, that seems reasonable to me. Diagnosis of a mild case should only be done in retrospect.

If your symptoms are getting worse and there is no let up from them, is it possible that you’ve been misdiagnosed? Either it’s relapsing remitting MS, or primary progressive. If the former, then you could get disease modifying drugs (DMDs) to decrease relapses. If it’s the latter, a new drug (Ocrevus) has just been made available for fairly recently diagnosed PPMS.

I do think you should be seeing a neurologist who specialises in MS to reassess you.

Meanwhile, I totally understand how you feel to be ‘holding back’ an able bodied partner at such a young age. I’m in a similar situation, aged 52 and a wheelchair user. My husband took early retirement 6 years ago and would love to be travelling more adventurously, to be walking and doing more than I am capable of.

Do you talk to your wife seriously about how fearful you are of the future? And how you feel you hold her back? Even if you don’t (many men would rather chop off their right hand than discuss ‘feelings’), what do you think she’d say? Would she immediately say ‘yes, I’m worried too, so I’ll leave you for an able bodied man’? Or ‘I love you in spite of your illness, so what if things get a bit worse over time, we’ll face it together’?

Never apologise for ranting occasionally on here, we do understand. And don’t mind listening and hopefully helping just a bit. I personally don’t feel that you ever have to ‘make peace’ or ‘accept’ MS. It’s a bleeping misery, and I’m sorry for us all who’ve been cursed by it. A good dose of anger is sometimes necessary.

Sue

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