I met with my neurologist on Thursday and he said he’s like 85% sure I have MS. I’ve been struggling with severe headaches for several years and my MRI indicates MS. I was also on Humira and Remicade for Crohn’s disease several years ago (neither worked) and he said that both been known to increased peoples ability to develop MS. He said as soon as he heard I was on those two medications, in combination with the history of two years of MRI scans, he knew right away that it was MS.
He’s going to follow up with a spinal tap in two weeks but I’m still floored that this is what he’s telling me. He took blood work and my WBC were elevated. My CSP and sed rate have always been elevated (for years), and I have other auto immune diseases. I guess I’m just super surprised. I have a 6 year old and didn’t see my life going in this direction. What does my life entrails in the next 10-20-30 years? Will I be mobile? How will the disease accelerate? What medications will I need to be on? Will I be able to be there for my child? Will I have to move in 15 years bc I can’t climb my stairs to get to my bedroom? I already have arthritis in my back and hips…
Ugh there is just so much info out there and I don’t want to spin out reading online scaring myself. Any support or advice as to what I can do now is appreciated. Thanks in advance.
) and Charlie82. More than happy to share my experience of 17 years since diagnosis. Everyone’s journey is different but I hope this helps. My diagnosis came after losing vision in my right eye and an MRI scan. It was all incredibly scary and felt like wandering alone in the dark not knowing what comes next. There was a short delay before I was started on weekly injections of Avonex ( which can leave me feeling a bit rubbish for a couple of day during which I just ‘take it easy’). What was probably a delay of just a few weeks did seem never ending and I do remember getting more than a little frustrated. However, I think it was just a result of the NHS not having enough MS nurses and consultants. Once on Avonex, things seemed to stabilise for a few years and I do remember telling my GP that apart from the weekly injections I sometimes forgot I had MS. A few years later however, I started having problems with my right leg which would just stop working/responding after an hour or more of walking. Over the years and 17 years later my right leg has got worse - difficultly walking after 15 minutes and I have slight problems most of the time plus some weakness in my right arm as well. On a more positive note, I can still cut the lawn ( it helps being able to hold onto the mower - or to a shopping trolley !) and I’ve been relaying some large concrete slabs ( admittedly with some trouble!). Other symptoms : my mind isn’t as good as it used to be but not too bad at all and apparently not much worse than my age group (I’m 70 next summer ). I have some bladder problems ( when I need to go I do need to find the nearest loo as soon as I can but I’ve not had any ‘accidents’). I do take care to attend to my emotional and mental ‘happiness’ - having the unknown of MS can be a bit of a ‘downer’ to put it mildly!