Hi to all. I am also new to this forum, but have some similar symptoms. I am 58 and was very physically active until 3 years ago when I began to experience right leg weakness. This started with the thigh muscles. Progression has been slow but steady. Weakness now in both legs, thighs and calves with foot drop on left when tired. All symptoms more severe as I become tired. Arms slightly weaker, but even clumsier than my norm. Also have pins and needles both legs and feet and both arms. This is small fiber neuropathy and could be unrelated and separate entity. On neurology exam have brisk (5+) reflexes, along with positive rhomberg and positive Babinsky in right foot only. Also fatigue and falling asleep inappropriately (like when driving) . I keep trying to tell others (docs & family) that my mind is going too. I have diminished concentration,& memory, and I "phase out" frequently. Even have some hallucinations that are tactile, auditory, and visual, but are brief and occur most frequently when starting to fall asleep (hypnogogic) . When I tell the docs they change the subject, and when I tell family they insist that I was always odd. Have been tested for dozens of possible causes from HIV to Lymes to MS and spinal A/V malformation. Neurologist now wanting to start treatment without formal diagnoses. I will be starting pulse IV steroids to be followed by Cytoxan. I have been most helped by someone on these boards who wrote that diagnosis is too far away and too limited in usefulness to focus on it but rather to focus on what practical things we can do to improve our lives now. By example, I now try to always have my cane because I may not need it at the beginning of the block but I will before the end of the block. Still, this is a frustrating, isolating illness that is both nebulous and devastating. I wish you good fortune and good friends.
Lee
