Preparing for a follow-up exam …

Thank you so much, I had never heard of that before you mentioned it but that is a extremely smart and helpful tool for people with Neuropathy and it seems as if though Doctors would tell patients more about anything that would help us get through this as best we can. Fortunately we have this platform to share our experiences and thoughts with one another that are very helpful. So thank you again I truly truly appreciate it and I pray for ongoing progress for you.

@centre I have been wearing AFO's for over 3 years and they help me a lot with the elimination of the foot slapping or tripping caused by drop foot. I fell on my face a few times with the toe not clearing in a forward step and down I went. The AFO's I wear have the strap about the calf and provides improved balance. Ed

@dbeshears1 Debbie - you are right about your PT comment. When I go back, they do a full analysis of my current condition which with PN, let's face it, changes occur. They will then give you strengthening exercises based on today's conditions. What to do, what not to do for your own safety. I will be going back in October, need to stretch out the timeline due to yearly caps in insurance which has never made sense to me and never will. Once thing for sure PT helps.

Hi,
I am Illa and I am on here a lot just reading and responding thanking God for all that you share because it it extremely helpful to me. So with my Neuropathy when I was diagnosed it was severe and progressive when I was diagnosed. I don’t know if you have heard my story , but as I stated I went to bed one night and woke up numb from my waist down. I had no clue what was going on a series of test and the shock treatment to see if you have it and how bad you have it was taking and that was my diagnosis Severe Progressive Peripheral Neuropathy. I went back to the doctor where at that time they told me there was nothing they could do and there was no cure and I would say that was 2 years ago maybe even 3. Never once did they recommend PT or balancing exercises to assist me or any of the recommendations that I have learned from this support group. So group from the bottom of my heart I thank you all because you have been such an inspiration to me. I pray that we all are able to continue encouraging each other and sharing our different perspectives of this ailment. My diagnosis has been prayer and trusting God to do the rest. I have my good and bad days but I won’t give up and I am encouraging you to keep your head up and stay positive because God is not finished with us yet. I Hope something was said to encourage you or bless your heart. Thank you so much for sharing and blessing mine. Have an amazing weekend everyone and God bless.

@ray666
When I am in the doctors office I have to tell myself that I am the customer and I have a right to ask all the questions that I need answers to........ For years as patients were not involved with our own care and intellegant
questions were not often asked,. We were told this is your diagnosis and here is what you need to do and take. So what I am trying to say is Ray you can ask as many questions as you need to!
I was diagnosed with CIPD 2 years ago and one question I ask my neurologist is: if this treatment does not work what will the next step be? All the questions that you listed are excellant questions... My prays will be with you! Please keep this group informed.
Kim

Kim - I couldn’t agree with you more, except… the medical “business” has taken a very bad turn. It seems as patients get smarter or more informed and want answers, medical corporations want more profit which means spending less time with patients. They also must work within what they believe are payment constraints from insurance companies. Thankfully technology has improved so we can check our own results real-time and help them avoid necessary callbacks. I’m not kidding you that just yesterday a doctor called me about a scan from 64 days ago to say he saw a lump, and asked ME if I had a copy of my previous scan from 6 months ago that he could compare it to!! (I just moved to this new state, but still, 64 days?? And he access now to all priors?But I knew when I saw my results 63 days ago that the lump was calcified and unchanged in size, so I wasn’t concerned). My point is many doctors are just frantically trying to keep up and are going insane. I think their latest rounds of corporate training have been focused on time management and that part of this includes standing during appointments and holding the door open while you’re wanting to ask your questions; and you almost feel sorry for THEM because they were 45 minutes late to your appointment and you know other patients are in line behind you and SOMEHOW these doctors have to catch up and make everyone else sacrifice their time so he can somehow do it and get home at a decent time to have dinner with his family, help kids with homework, then catch up on paperwork. I’ve read where they’re trying to get insurance companies to pay them for “visits” because of the increase of patient portal questions, which they all believed at first would help with the office workload. It just seems the more we patients have thought we were gaining, it’s been a disadvantage to the doctors and they’re running from us. There needs to be a win-win in handling patients’ needs and helping make sure doctors have the fair time they need to do their job. If we all need to be 15 minute patients, give us our 15 minutes, as we’ve waited 6 months for this appointment. But when our time is up, give us our 1 minute warning and tell us to book a follow up on our way out. I wish I had a solution- I hope collectively the medical business can find one because I think most doctors are as frustrated as a lot of patients and we’re all losing ground. I’ve been blessed with great medical practices along the way, but it is very difficult when you’re trying to work within a broken one. It’s weird when I feel so elated after only spending 4 minutes with a doctor, being so happy I could give them time I don’t need, but then need my 15 minutes next time but can only get 10.

@dbeshears1 Hi Deb....your post above is interesting, and I did read it twice before I decided to respond. First, you are on target 100% (as usual!!) but I wanted to follow up with something that I've decided to do. I make my appointments, when possible, with a nurse practitioner both in my primary and specialty doctor visits. I know that might sound a little off base, but they have more time to address my questions and I think they tend to deal with patients on a level that we understand. I recently had a fall and went to urgent care; nurse practitioner saw me and she was terrific. So, this has worked out well for me. Also, my primary is a nurse practitioner, and all my appointments are 30 minutes. If something is above her head, she drags in the doctor. Ed

Ed - I love it! I’ll tell you this: As I was moving away from my NC Cardiologist (loved him!!), he told me to get used to PA’s and Nurse Practitioners. He said that’s the way the medical business was moving, part of “cost reduction”. He said we’ll see lower paid but highly skilled practitioners while there will be fewer “MD’s”, and they’ll be reserved for higher level needs as they segregate the medical activities. So my move to SC was like that, my Cardiologist MD has introduced his team of Nurse Practitioners. New doctors (med university) have their preferred medicines/regimen, so my NP is managing the change and I’ll only see him annually or if needed. I can’t believe how well it’s working, and will take your advice and proactively seek them out in other specialties. Thanks Ed, and I hope you’re recovering well from your fall. I had my office chair (with wheels) slip out from under me last week. It smarted, twisted my knee a little in the process of falling. Though I felt stupid for letting my guard down, I am glad to report that what I’ve learned from PT got me up off my floor by myself!

Kim (@kimegraves), Debbie (@dbeshears1)

That was a lesson I learned a long time ago, watching how my parents, aunts, and uncles related to their doctors. In short, they didn't relate, at least not in any active way. They played a passive role, never feeling presumptuous enough to ask questions or challenge their doctors' advice. Folks in my family received their doctors' wisdom and went on their way.

Now, I'm not faulting their doctors. I'm sure their doctors did their best in those less corporatized days.

But how many red-flag symptoms went unmentioned by my parents, aunts, and uncles? I'll never know. What I do know is that when any of my parents' generation ended up hospitalized, it always seemed to come as a great shock ("Who knew Aunt Betty was so ill?"), and the prognosis we'd be informed was always bleak ("If you'd like to see Aunt Betty, I'd suggest you not delay"). If only my parents, aunts, and uncles had partnered more with their doctors, things might have been different.

So I ask questions.

I hope you're having a fine weekend!
Cheers!
Ray (@ray666)

Hello!

I know it's unfair to add yet another post merely to say, "Ditto!" I also operate almost entirely in a world of PNs, NPs, and MAs. Frankly, I don't feel neglected. The doctor surrogates are excellent. Of the many MD specialists (and I stopped counting years ago) whose business cards I have on file, there's only one who will always meet with me himself (with his NP by his side). I suspect it's because it's his own practice (he has two other MDs working for him). He's never rushed (that appointment I had only last Tuesday lasted 3/4-hour), and (believe it or not) he actually SITS DOWN! Amazing, isn't it? 😀

Ray (@ray666)