I've been lurking for a while and decided that I'd like some company on this journey from folks who understand.
While I've had unexplained stuff for years, my first episode was a year and a half ago -- life hasn't been the same since. A couple of months ago my 3rd episode started (tight but gumby legs with difficulty walking, weakness, balance problems, buzzing/tingling/prickling in the legs/arms/torso, nerve pain in legs, slurring, hardcore fatigue, tight tight throat, urination frequency that's off the charts, blah, blah).
I've been spiraling worrying about holding down my job as it's just me and my mortgage. I leave work early when the cog-fog/fatigue hits before I lose my legs and start slurring.
The MS Neurologist says I'm a tad out of the MS box as the MRI brain lesions aren't quite classic, the spine & VEP are clean, and my symptoms gradually come on and then go. She said true MS is sudden. So, I'm in what she refers to as the MS Spectrum. She said for all purposes if I needed to explain to someone what's going on I could say I have MS and she could help with symptom management but she can't recommend CRAB for me. Honestly, I'm not sure if that's a good or bad thing.
I'll be touching base with her in a few weeks after the LP. She recommended I do all the other things helpful for MS and we'll keep doing follow-up MRIs. I worry about the continued loss of function though in the meantime.
I'm tired of going solo on this journey. My life is really small due to my energy being used for the basics -- so that compounds the isolation. I do find moments of peace though and will continue to look for them.
Look forward to hearing from and learning from others on this journey.
Last edited by bibliotekaren
on Tue Jun 30, 2009 10:17 pm, edited 1 time in total.