In limbo

Hi all, I’ve been having tingling/numbness/weakness in limbs for a while now. I got diagnosed with discoid lupus (auto-immune illness that attacks skin) a couple of months ago, which I found hard enough. Then last week, I finally went for an MRI because of these symptoms in my limbs- not good news. The neurologist says I have ‘myelitis’- a swelling in my spine (at neck level) and there was one white spot in the brain scan too. He is being all positive and says it’ll most likely go away by itself & one white spot isn’t worrying. But I am worried. He says MS is a possibilty- and now I have to wait 6 months for another MRI…am so stressed. One bad diagnosis is bad enough…So hoping this isn’t what I fear :frowning:

Hello and welcome :slight_smile:

It certainly sounds like MS is a possibility, but it’s also perfectly true that it might go away by itself and never return because about 50% of people who get this sort of first attack never have another. Another possibility that came to my (unqualified!) mind is Systemic Lupus Erythematosus (SLE). A quick google told me that although discoid lupus is not the same thing as SLE, it can occur in SLE and in a small % of cases it can precede SLE. SLE can also cause spinal and brain lesions. I’m sure the neuro will have considered all of that of course, assuming that he knew about the discoid lupus?

If it does turn out to be MS, then I know it’s scary, but as time goes on you will learn that it really isn’t the end of the world. The way that MS is portrayed on the TV, etc, is woefully inaccurate. The truth is that meds, therapy, equipment, etc, are massively improved these days, most people with MS never need a wheelchair and the vast majority of us live long and happy lives. It may not be want anyone would wish for, and it does make life difficult at times, but it really isn’t the end of the world.

Karen x