This is my first post, I’ve been reading on the forums for a few months now and am grateful for the comfort that it has given me to know that there are others out there going through and thinking similar things as me.
I had my first attack last June last year whilst on a business trip, I lost feeling from the neck down. When I was admitted to hospital they did an MRI on the brain and spine and found 8 lesions on the brain and 2 on the spine. After a course of IV steroids I was released with a diagnosis of CIS.
I had another MRI 4 months later which showed no changes, and my invoked potentials test didn’t raise any red flags.
Things were starting to get back to normal, with only minor tingling / numbness in my fingertips, and then around Easter I started to get the tingling and numbness back, in addition I had (what I thought) was bad fatigue. Just walking the kids to school meant that I needed a 2 hour nap to recover, and occasionally got the “MS hug” sensation. I spoke with the MS nurses who referred to it as a “sensory episode” and have in turn spoken to my Neurologist. An appointment was made for me to go in and see the Neurologist in June (10 weeks later), and I was left like that.
Things started to get better, the tingling was going back to normal levels, and the “ms hug” had stopped occurring. Then after the May bank holiday I started to get symptoms again, the tingling, the hug, and this time the fatigue was a lot worse. I couldn’t think straight, I was getting vertigo when I was out and about, and sleeping most of the day.
I spoke with the MS nurses again last week who asked me to get a urine test to check if I had a bladder infection, as apparently that can make symptoms worse (I’ve had it checked and I don’t have an infection). They were also going to speak with my Neurologist yesterday.
I don’t know what to do, I am finding this all kind of overwhelming at the moment, and just want to know what’s going on. Even if it it turns out to be another episode and my CIS becomes MS, at least I will know, and stop feeling in limbo. But do I chase the Nurses and see what the Neurologist said, or assume they would contact me if there was any update? I don’t want to bother the Nurses unduly but this uncertainty is unbearable.
Sorry, this message went on longer than I was planning on, I don’t usually unload like this, but it will be good to talk to others who can appreciate my situation.