Reply To: How long after onset did you begin to actually lose strength, not just weakness?

March 20, 2015 at 9:35 am

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.