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Preparing for a follow-up exam …

Neuropathy | Last Active: Aug 14, 2023 | Replies (39)

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@ray666

Good morning, Illa (@illac), centre (@centre), others watching this thread,

I had my much-anticipated meeting with my neurologist yesterday (my partner was with me) and was largely satisfied. "Largely" means only that I've still things to think about. But I always do, don't I, and always will. 😀 The neurologist and I discussed all five of my questions. (1) What is a fuller name for my condition? Answer: Idiopathic large fiber, motor/sensory peripheral neuropathy. (I had been thinking: motor only). (2) Should I be concerned about the 35 mg/capsules I get twice with the EB-N5? Answer: No, but to unpack that "no" and say why I am comfortable with my doctor's answer would require several hundred words in a post all by itself. (3) Should I do additional PT (with a therapist experienced in neuropathic conditions) in addition to the at-home PT I'm currently doing? Answer: Not necessary; continue with my at-home PT, emphasizing balance work and perhaps adding a little upper body strength training. (4) Does my cervical stenosis show signs of needing immediate attention? Answer: My condition appears stable, so continue with a wait-and-reassess approach. (5) A second EMG? Answer: The neurologist said he'd give it thought, and we'd discuss it at my next follow-up.

By the way, I am familiar with an ankle/foot orthosis. I was given one to wear (20 years ago?) when I had a spell of drop-foot. The drop-foot cleared up after 2-3 months, although I can still hear whispers of it occasionally when I'm out walking.

Ray

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Replies to "Good morning, Illa (@illac), centre (@centre), others watching this thread, I had my much-anticipated meeting with..."

I’m glad you generally got the bulk of what you were looking from at your appointment (except for cause & cure 😊) I pretty much have what you have, though sometimes a doc will say “poly” in front of Neuropathy, and say that since the EMG diagnosed that, it is therefore not SFN too. Just a note on PT: I agree you absolutely must do at home exercises as a routine. However, personally I feel like a checkin for occasional sessions with a licensed PT is beneficial. For me it’s because: 1) They can be a professional spotter for exercises with movements that might not be as safe at home; 2) They have exercise toys and setups we also do not have at home, or if they come to your home, can help you use your appliances and hardware most effectively; 3) They constantly observe and test areas of strength and weakness to ensure our at home exercise routine is optimal; 4) They test our limits and help us understand them; 5) You get an occasional muscle/tension massage if/when/where needed 😄; and finally 5) They teach/help me get off the floor in the event I’ve fallen. Keep in mind that I can’t just squat, put my hands in the floor and gently sit on my butt. My PN doesn’t let me knees do that. For me to get on the ground, it will be a hard, dangerous drop or slide, one you never want to simulate in real life just to see if you can get up. Sure, I practice exercises on how to best brace or position myself if I have seconds when I know a fall is in progress, but I never practice a complete fall, as it will definitely smart in one way of another; I just hope it’s not incapacitating if it must happen. But PT safely gets me on the floor, so once there, they can help me think and practice the art of getting back up by myself. Those are just some of my thoughts around the value of PT….