awaiting diagnosis - feeling awful
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Hi. I’m not sure how this works, so am replying to my post to give more details. Three months ago I was walking several miles a day with the dog. Started with a tiny numb patch on my left thigh. This spread down my leg and my other leg, so I can barely shuffle across the room with a stick. I’m 69. I’ve had MRI scans which reveal lesions in brain and spinal cord. Ive seen a neurologist who says it is probably MS or a similar autoimmune disease. e.g. MOGAD. Awaiting further blood test results. I’ve just completed a 5 day course of 500mg methylprednisolone twice a day. I knew it won’t be an overnight improvement, but I didn’t expect the symptoms to get so much worse in this time. Just wondering if anyone has had similar experience.
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That’s an awful shock for you and no wonder if you are reeling a bit - I am very sorry that you have such a load of new worries to deal with.
I must admit that I have not experienced things getting actively worse while I’m on a course of high dose steroids, although it can certainly take time for things to get as much better as they’re going to. But everyone’s experience is different, and even in one person responses to steroids an vary if my own experience is anything to go by.
It’s probably worth trying to get in touch with your medical advisor (easier said than done, I know) if things don’t start heading in the right direction soon and/or you feel something just isn’t right.
thank you for the reply. I think it’s just not knowing what to expect when it is something so new.
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That must be very difficult. I’m in my 60s too but I have had MS for 25+ years. It isn’t something that one expects to pop out of the woodwork at our age really, is it? I hope that you get some clarity soon about what is going on and what your treatment options are. Don’t worry too much if you feel a bit rough after the steroids - they are very good and powerful drugs but they can feel like a bit of an assault on the system. I hope that they get to work on your current symptoms soon.
That makes complete sense. When something is so new and uncertain, it’s often the not knowing that feels the hardest part.
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