Forum

Sensory issues

Hello

Been reading the advice on here since I was diagnosed June last year. Before this I had optic neuritis and bowel and bladder issues and fatigue issues ( use peristeen, Botox in the bladder and take modafinil ¤. I now need advice as I’m getting all confused. I was told I had RRMS when diagnosed, I had a sensory relapse in July last year. I then had an appointment with a professor in neurology who said it was benign and I didn’t qualify for dmd’s. Then September 2012 had a motor and sensory relapse and was told I was rrms. Recently I started again with sensory problems (it hurt to put my feet on the floor )and I have been given Gabapentin, ihave been taking 300 mg three times a day for two weeks, this calmed it down for about a week and now it’s back again so I went to the GP today and he has put me down to 100 mg once a day he said I only have mild issues. I don’t understand any of it they make me feel like it’s all in my head again. Before this recent flare up I felt fab the best I’ve felt in months. Am I being oversensitive and silly?

Hi Anon,

To get a few things straight, there is no such diagnosis as “mild” MS, and a diagnosis of “benign” MS can only be made retrospectively, if the patient has had few/no problems for ten years or more.

Even a “benign” label wouldn’t mean the patient experienced no symptoms at all, but only that they didn’t suffer marked disability, over the years.

“Benign” doesn’t conflict with it still being RRMS - it’s not a separate diagnosis. “Benign” would just be MS - probably RRMS - that has been pretty well-behaved over the years. So any comments about “mild”, or “benign” certainly don’t contradict what you’ve been told about it being RRMS.

You have to remember that neuros (and some GPs) do see the full spectrum of cases, including people very profoundly affected. So something they refer to as “mild” (compared to the worst they’ve seen) does NOT mean you’re unaffected. Although it can seem dismissive to be told that stuff that’s bugging you a lot is “mild”, I think you’ve got to read into it the phrase: “…compared to how it could be”. It doesn’t mean you’re fine, or it’s in your head, but only that they see worse.

Tina

x