Posted 8/12/2017 5:03 PM (GMT 0)
Hi Girlie,
Thanks for your response. My symptoms were/are atypical for MS, but unusual for Lyme also, in terms of presentation.
Started with a cognitive attack/brain fog (trouble with stm and immediate memory) and tingling in early 2014. Didn't have typical fever as far as I remember, but maybe I did and didn't think much of it. I got bitten by something (dont know what) the year before getting ill, never got treatment, i didn't have bullseye rash but there was a hole in my leg and my leg swelled really, really badly and went purple for about a month.
It's been slowly progressive so if it were MS, very very unusual for primary progressive MS as most ppms starts with gait. Looking at roughly 100 people in the whole UK who would have PPMS with cognitive symptoms first, out of 10,000 with it. The fact I remember the bite, symptoms and the thought that am I actually one of the 100 unluckiest people in the whole UK led me to testing for lyme.
Also have floaters, noise and light sensitivity, bad fatigue, hair loss, irritability.
Whatever I have, it has gotten a hell of a lot worse after taking a probiotic for 2 weeks in march. it was potent, i should never have taken it, but i did, and now have much much worse cognition and neuropathic pains, leg tightness, migraines, increased hair loss, slight problems with balance and vision, have had fevers and chills, severe abdominal cramps. It's been a very very scary 4 months. I stopped the probiotic in April and it's still hurtling onwards!! Had an MRI last november which showed some tiny tiny lesions but the neuro thought little of it, especially after lumbar puncture came back negative too. I wonder if I had another now, I think it would show more lesions after what i've been through for the last few months.
I never considered MS at all, it was too unusual for the presentation of symptoms, and some of the symptoms didn't fit quite right. Maybe it is, maybe it's not, maybe I have MS and Lyme!
But here I am. No LLMD so far I'm afraid.