Reply To: How long after onset did you begin to actually lose strength, not just weakness?
I’ll be honest. None of my symptoms made sense to me. For me it started with GI issues, then my knee hurt walking down hill, then the numbness and tingling started – then as time went on it turned into extreme fatigue and memory loss and my eyes – oh how my eyes hurt. I thought it was all just natural aging… My neurologist asked me (during the lower emg) if I had numbness and tingling in my feet or legs? I said, “Yes, how did you know that?” I thought this was just part of aging. He said, “How old are you?” I told him “45”. He laughed and said, “No, this is not a normal part of the aging process.” I never thought to tell him this information in my first visit with him – because of what I thought was going on where that is concerned. I have wore high heel shoes for years, sat in uncomfortable desk chairs… I had no reason to think it was something more serious.
But to your question. My symptoms started in 2010. I would say symptoms became progressively worse over the course of a couple years – but 2013 to now the symptoms have become much worse and progression even faster. Until my first IVIG I had a new symptom pop up every 3-6 months.