A little about myself. I'm married, 56 years old with a teenage daughter..
I was an avid runner upto a little over a year ago (January 2014). I stopped running (while training for the Boston Marathon) because of an ankle injury (posterior tibial tendon partial tear). As I was in physical therapy I started getting uncomfortable doing the exercises that put pressure on my forefoot. Over the next several months I would get numbness, tingling, twitching and sometimes cramping in my left foot. I saw a foot doctor at least a dozen times last year. As the months progressed I started getting tingling in one of my hands and a couple months later in both hands. Last summer I was feeling some heaviness in both my legs. I saw a neurologist, and a rheumatologist. Had a brain & spine MRI and lots of blood work as well as a nerve conduction test (probes, not needles). Every thing came back normal. Both doctors told me to go back to the foot doctor. The neurologist thought it might be stress induced but the only stress I had was from the symptoms, no stress before.
I apologize if this is long but also thought other people my be able to relate as well and just want to get a little bit of my history out there for my first post.
Anyway my regular doc prescribed testosterone gel as my levels were on the low side. I don't know if that had anything to do with it but my symptoms seemed to get a little better but didn't go away. I had stopped running but became quite an avid swimmer until a little over three weeks ago. Symptoms have come back fairly aggressively for me and never this bad before. Seeing some muscle wasting in my hand and feet. Both feet numb or burning most of the time. losing weight. Feeling some pressure in the side of my head, feeling off balance at times, hands feeling shaky, both feet numb on and off. Numbness is worse when sitting or driving the car. Wondering each day if I will wake up and be able to get out of bed. Btw I stopped taking the testosterone gel about two weeks ago after relapse or whatever you want to call it. I was taking 20mg of gel a day which I believe is a low dose compared to most who are on it.
Happy to share with anyone further. I know some here have dealt with this for years and my heart goes out to you.
Would love any tips on treatments that seem to help, minor or major. Also I know this is a rare disease but was wondering if any knew if there is any hereditary disposition? Curious as my Grandfather died when my father was a young boy. All I know is that he spent 8 years in a hospital before he died back in the 1930's. I have no idea what his illness was.
Also does exercise make symptoms worse for any of you? I was exercising regulary (mostly swimming and light weights). Have done very little last few weeks and feeling like I'm going downhill fast.
Thanks for letting me share and God bless you all.
P.S. Going in tomorrow for another nerve conduction test with a new neurologist. Needles this time (ouch!)