Preparing for a follow-up exam …

Hi, Ed (@njed), Debbie (@dbeshears1)

Oh, spare me complainers! I can find doctors' waiting rooms to be totally spirit-killing. I watch as the nurse calls others ahead of me to come to where their doctors will see them. The nurse will ask the obligatory "How are you?" The patients' answers are so often "Don't ask," or "I've had better days," or "You don't want to know." I realize many of these patients are in severe pain. Not all of them, though. For those who aren't in severe pain, carrying that attitude into the exam room can't help but sour everyone's experience: doctor, nurse, and patient. Even when you don't feel very cheery, a little cheeriness can go a long way.

Ray (@ray666)

I just got lucky with my current PT. I’m going to Results Physiotherapy because I like their philosophy, and it works!

Hi Ray,
It sounds like you have most if not all the information that you need. Those questions cover all of the bases and the best of luck at your appointment. I pray that you will receive all of the answers that you are looking for. I to suffer a great deal with my balance and I was just inquiring as to what type of balance excersise you are doing and would you please be so kind as to share it with me. I truly appreciate it and thank you in advance. I am looking forward to hearing about your appointment and the best of luck again when you see the doctor. Have a beautiful and blessed day.

Hi Ray- I waited 3 months for an appointment with a large PT practice, with the PT most knowledgeable and experienced with PN, although offered appointments within a week or two with others. A “senior therapist” or the department head is most likely to be your best bet to ask for.
On the first evaluation visit, I brought copies of my most recent MRI and EMG reports (printed them off from the patient portal), he was very appreciative and took the time to read them carefully. The treatment and instruction he gave was very helpful, I continue to do the home program, and accepted his recommendation to have an ankle foot orthosis made to aid in balance and gait. That was a hard Rubicon to cross for me, but it has made a big improvement in my mobility.

Thanks, Illa! (@illac) I just sent a copy of my questions to my doctor's office and followed with a call to his PA to say my questions were there, should he have time to look them over in advance. My balance routine? It's a bit of a smorgasbord, pulled together from PT handouts I've saved, Carol Clements's book, "Better Balance for Life," and an online program (coincidentally, with the same name), "Better Balance for Life," taught by Lesley French. from her home in Perth, Australia. You can find Lesley French's program with a simple web search. And, of course, I'll let you know how tomorrow goes. –Ray (@ray666)

Ray,
Thank you so much I am looking forward to it.

Hi I am Illa and I was just reading your suggestions to Ray and I don’t mean to be butting in but I just had a question. Can you explain what an ankle foot orthosis is? I had never heard of that before and with my Peripheral Neuropathy my balance is extremely challenged and I am open to any information. Thank you so much in advance and I appreciate all the knowledge that I have been able to obtain.

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

Hi Illa, my PN has caused weakness in my right ankle- I have foot drop- when walking, my ankle doesn’t “automatically” bend up enough to clear my toes during the step-through, so I’m prone to catch them and lose my balance. My soleus muscle now has poor innervation, so I also don’t get much “push-off” for the next step.
The PT made arrangements for a metal rocker plate to be embedded in my shoe, which gives me a mechanical push-off assist. He also sent me to an orthotist, who made the ankle foot orthosis (AFO). It was pretty cool- wrapped my leg in a wet wrap that hardened quickly, cut it off with a special angled hand saw, sent the “mold” out, and 4 weeks later came a lightweight but sturdy plastic brace with a dynamic ankle bending piece and a Velcro strap near my knee. I bought light compression Dr Scholl knee socks at Walmart and off I go! I can’t drive wearing it as I can’t feel the pedals, but I take it in a bag and put it on in the car before I head out for my walk. Medicare paid for the brace.
My best advice is to ask your PCP for a PT referral, they’ll tell you if a brace would be helpful (and lots of other things too). PTs usually have favorite orthotists to send you too. I called there and got the instructions for how to do this, called the PCP to FAX the order to them, and they called once they got it to set an appointment. After I got the brace, I went back to the PT for a few visits to make sure I was using it correctly, didn’t want to develop any bad habits.

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….