What to ask a podiatrist?

@dbeshears1 - Debbie - you are 100% right. I' ve been in and out of PT for about 5 years and just as I think it starts to help....guess what? Medicare says I hit my limit for the year. My doc writes the prescription for PT, in you go and ... oh well, see you again in January. Makes no sense. The rule, as I understand it is Medicare will not pay to maintain what you now have, there has to be evidence of improvement. I go to PT to try and improve my balance, so I practice at home standing on one foot staring at my watch and hope to increase my balance. During summer months, I back down to 1 day a week or every 2 weeks to try to get me to end of Oct. Then, in January...well, you know the rest.

@dbeshears1 Debbie, on the MRI issue. Yes, obviously you have concerns, and I can't blame you for the interest in having the MRI. But every coin has two sides. I assume you are wanting an MRI of the brain. Neuro doc in 2015 ordered MRI of my brain, came back normal. I had just gone on Medicare. Ok, so that rules out brain issue. As my PN became worse, I insisted on another follow up MRI of the brain, in 2017, no changes, normal. During this time, I was also experiencing lower back pain which was mild in 2014 and intensified until an MRI of lower spine in 2018 showed issues....but, not bad enough to be causing neuropathy in feet. Based on my frustration in trying to find out what was going on, I ended up at Mayo in MN in Feb 2020. Like you, my dx was axonal PN, idiopathic both sensory and motor. Is it possible in your case, it is a matter of insurance? Having the nerve biopsy confirmed axonal MIGHT negate the need for the MRI because the insurance will argue that your diagnosis MIGHT rule out any brain issues. Can the brain cause axonal?? Our nature is to rules things out, as I did but could this be good news for you? That is, the doc does not see a need for the MRI?? Again, every coin has two sides. The best and keep moving! Ed

Ray - OK, sounds good, let us know how you make out Tues. Just a thought about the EMG. In 2018, I had an EMG of lower legs and feet. The neuro doc also did MRI of my left hand, I'm right-handed. I don't have any issues with my hands. I was wrong. Well....because of the normal progression of PN, it showed I had some neuropathy in several fingers. Doc said I know you can't feel it but it's there. My last EMG was in 2020. In 2022, I asked about an updated EMG. My neuro doc said let's wait. I see her this Oct. Does there need to be reason other than curiosity??

Ed -Definitely very good thoughts to ponder. I have/had “Mal de Debarquement Syndrome” ever since I got off a week long family cruise in late 2015 (1 year before this PN came along). It’s rare for it to still linger this long; certain situations still make me feel like I’m swaying on a rocking boat (like looking out of windows on high floors or standing in front of an elevator waiting), but it is so very much better than the 18 months after I got off that cruise and couldn’t pump gas without holding onto something. That was the very specific referral for brain MRI I got last year, it was a very specific area and not looking for anything Neuropathy. I guess I’ve been thinking for PN and my complaint of lower back pain that came with it that an MRI of the whole spinal cord is what I’ve been wanting, see if any nerves are being pinched or how my lower back is? Maybe even a Ct Scan might help? I admit I am not a medical person.
As for insurance being deciding factors, I kind of doubt it. My general experience is that doctors themselves rarely know what kind of insurance I have or what it covers. However, I’m inclined to believe many do know more about the Medicare plan, as I had a doctor 6 years ago outright tell me he couldn’t do something because of Medicare. I kindly told him that I wasn’t on Medicare, and he did an “oops” and got the PT referral in. Another doctor said I couldn’t get a referral to Duke in NC because I lived in SC back then and my insurance would require me to stay in state and go to MUSC in Charleston, and both university hospitals were 3 hours from where I lived, just different directions. I very quickly caught him on that one and told him my insurance was OK as long as I stayed in the United States. (Over time I realized there was a courtesy buddy-system within SC to push patients to their state medical university)
My insurance has changed over time, as I eventually was officially disabled, which after 18 months or so of that made me go on Medicare despite my younger age; then with my other insurance has recently changed to a Medicare advantage plan, so I don’t even know my benefits and coverages anymore lol!! All I know is I still pay for Medicare and my other insurance. Seriously though, my Medicare Advantage Plan (UHC) covers PT very generously vs Medicare and pays for gym memberships too.
My PT says a disadvantage of an MRI is that it very often tells patients of a finding that has never been an issue so shouldn’t be a concern, but that once a patient learns of it they get alarmed and want something fixed that isn’t broken, and that’s a thinking that doctors have about not wanting to do MRIs. But while I’ve forgiven, I’ll never forget a Medical University in 2019 not telling me of a (cancerous) lump they found in a scan, and even when I finally requested the report and discovered their finding, I didn’t see or thought I felt the cancer - but it needed to be treated! So parts of me would like an MRI to help convince me there’s nothing there (or is) to help explain. But Ed, I know I have to get over it, sorry to dwell.
In the mean time, your valuable coaching words are with me everyday- to Think Of What We CAN Do, not What We CAN’T Do! And to keep moving! Deb

I bought Ortho feet shoes and always wore a size 10, having numb feet and hammertoes I ordered a 11, thinking the wide toe box would help. Well it does not. I feel like no shoes help me. I never go without shoes even as a kid. I bought a pair of good slipper a size bigger and they hurt my hammertoes. I guess I should go to a store that specializes in feet. Any suggestions for me? Thank You P.S I thought things shrink as we get older but my feet as gotten bigger!!!

I think the trick might be buying the size shoe that fits you but with the wide or extra wide toe box and flexible material on the top so the top of your toes don't have pressure on them. It's been an adventure for me trying to find something that fits and also feels good. My case might also be because I wear a size 14 shoe. 🙂

@dbeshears1 Deb - you sure have some unusual circumstances going on and I understand and agree with you about the MRI in light of your episode in 2019. The world of medicine can be confusing and I'm being kind with my wording right now ... however, I've found over the years that tests are ordered in most cases to rule things out and then finally drill down on what the problem could be ruling out the worst-case scenarios. THIS IS what is so different about PN. About 20 million people in US have PN and many of us just don't know why and will never know why. So, we must figure out how to live with it and do our best. The medical community simply don't see this as a major health issue. After all, it's only about 6.5% of the population. If they only knew!! Keep moving -- Ed

Sounds familiar- while the room for toes should no doubt be beneficial for my hammering toes, the body parts on me that did seem to shrink are my ankles and mid-foot. Shoes with wide toe boxes usually come with wide everywhere, and I need support for my upper heel/ankle- I can’t walk if I’m going to twist my ankle because it’s moving around in my shoe. So even if I pad with the thickest sock possible, the padding is on the toes too, so I’ve crammed the toe box again! Vicious cycle isn’t it? For me, I need my shoe with a little cushion and more like it’s a “brace”, not a flip flop. My best trial & error (from recommendations here too) landed me on Skechers. It seems to have the best overall fit with the socks I also need to wear for the ankle support I need. I hope you find the best fit for you!

Ed - I get it, I really do. I know you, like me, have invested a a lot of time & $$$ of our own, and have been physically inconvenienced with travel and overnight stays in our quests for answers, and there’s nothing worse than looking at our checkbooks (and ourselves in the mirror) afterward and realizing we got absolutely nothing for what we had hoped would be an investment. Our sacrificing spouses get a little (lot) frustrated too. So there’s a time to put an end to the madness for sure. Meanwhile, our community PT has added another Tone & Balance course to our weekly schedule so I’m in Heaven! (But can’t go until after my trip north to see an Orioles game this week and hopefully run into some steamed crabs 😊)

Debbie -The added tone and balance course sounds interesting. With PN, I agree, we do spend time setting up appointments, going here and there. You are right but it is necessary. You could look at it another way, in some early on testing, perhaps they did tests to determine what you don't have. There are a lot of things out there way worse than PN. Chesapeake crabs...the biggest and best! We are a fan of St. Michael's.