I just wanted to get a second opinion from you guys about whether I should be concerned about the lack of urgency my neurologist is showing towards my treatment.
So my MS journey all started on 20th Feb, when out of nowhere I got double-vision. I had blood tests which showed I was dangerously low on Vitamin D, and eventually after a couple weeks my GP referred me for an MRI because my vision hadn’t gotten any better.
Fast-forward another 3 MRI’s and I was diagnosed with MS on 20th May. Apparently my 4 MRI’s (two on brain, two on spinal cord) show clear lesions and enough evidence for a concrete diagnosis. I went on a course of strong steroids for one week because apparently the inflammation in my brain and spinal cord was quite severe, but since then, everything has been very relaxed. I had a lumbar puncture on Tuesday, but have been told I may not get the results for about 8 weeks. And then after that my neurologist will schedule an appointment for me, and that could be another 1-2 months before I see him.
I’m not on any treatment at the moment, nor has any particular medication even been suggested for me.
But my concern is that it’s already been over 4 months since my optical neuritis, and I have symptoms of relapses tracing right back to my early teens (I’m 27 now, very nearly 28). Throughout my childhood/ teenage years I have so many examples of health “blips” which were never understood by my doctors but which now all fall under MS.
So, I’m really worried that this delay is just allowing more damage to continue to be done, whilst they’re faffing with appointments? Surely another 3-4 + months before I receive any treatment is another 3-4 + months of damage?
Should I relax about this? Or just try to push them a bit? I’m just so anxious and I already feel like I’m struggling with this diagnosis as it is, I can’t bare the thought of just being forgotten about and pushed to the bottom of their to-do lists whilst this just gets worse???
Feeling so down at the moment 😔
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