Preparing for a follow-up exam …

Hi Ray, Looking forward to hearing what answers you get for your questions. I'm thinking you might have already prioritized your questions for the neurologist by your numbers. If not, that would be one thing to do to make sure the ones most important to you are 1, 2, 3... Hoping you get some answers next Tuesday!

Hi, John

Thanks for your suggestion about prioritizing! I've left doctors' offices in the past feeling I'd gotten nowhere, only to realize I'd been expecting too much of a 20-25 minute appointment.

After sending my post, I noticed that MS Word had taken it upon itself to put some of my sentences into the past tense ("when I met" instead of "when I meet"), giving the impression that I'd already met my doctor. I plan to have a long, hard talk with MS Word. 😀

Ray

....may I say good idea to have prepared questions; I waited months to see neurologist out of town had seen before but this time the burning face red or not had now for year... I am so silly to think HE would be the one to ask ME questions... but it was a very flat appointment - last one on a Friday afternoon.. he did the squeezing of hands; pen in front of eyes right and left, and am not sure if another... said didnt think neurological problem (have mild PN hands and feet for 7 yrs and small stroke 2021)... and that was it; his report to Nurse was good - saying neurological exam etc. and so no action being taken to discover cause - again... although I notice now when warm or in heat/sun even for few minutes my fact is boiling and can be 4 hours... anyway this is not about me... sorry ... just will, like you, have my questions ready next specialist appointment but to be honest I dont always know what to ask!
Best of luck for future to you! J.

@ray666 - Ray - My only suggestion would be to print out the five items and hand it to the neurologist. On my last neuro doc visit, I had 4 items to ask and figured who can't remember 4 items. Could only remember 2 of the 4. On my way home, I remembered the other 2 items. This also happens when I go to the store except with the store, I can go back the next day. Good luck with your appointment! Ed

I am a big fan of patient portals. I have several ongoing conversations right now, one with my neurologist, the other with a nurse practitioner at UAB. The B6 question is easy to answer - they can order blood levels to check that. Because my journey started out with a rheumatologist, before my SFN diagnosis, I have all sorts of bloodwork results to refer to.
But my point was, maybe you could submit these questions to your doctor via the patient portal and let him get a head start on preparing answers.
Regarding PT, I personally think it’s always helpful to have a refresher visit with a trusted PT. They will see things you may not, and be able to offer helpful tips that match your current condition. I love a good PT!

I agree with Ed - have a copy of the questions for the doctor. My PCP’s nurse came to always ask for it when she did my vitals and stuff, and my doctor had it before she entered my room and had a chance to scan it and think about it in the moments before seeing me and perhaps be able to combine some of the answers to questions. She was just brilliant that way, not all my doctors were. I knew I had to keep each question or bullet in as few words possible (big challenge for me) - makes it look less overwhelming; we can chat details if they need more. I always had a side list of positive things working for me to show I wasn’t just a complainer. Keep a list for yourself to follow along with the doctor covering your list so you don’t forget anything and in the event you have an extra minute can say “how about question #3, do you have thoughts on that one?” I know you have a history of shoe preferences, that might be a positive. For me, I plan to ask my Neurologist if he has a recommendation for podiatrist or shoe fitting specialist that might be able to make sure I’m getting what I need from my shoes for my foot type that will help with gait and balance.

Hi Debbie - Great suggestion about the side list of positive things! I'm sure the doctor - and his staff - really appreciate that. Even if outcomes are not yet substantial, an expression of gratitude for their effort is appreciated. Patients who find a way to treat the staff, from the receptionist, intake nurse, P.A., etc., all the way to the doctor, with respect and grace, find that he/she takes a deeper interest in those appointments than the ones where the patient finds fault with every encounter. Blessings to you!

@bjk3 You are right about the positive things. I do try to do that, and I've found that the nurse for the doctor always appreciates hearing about the positive things with your health and not just the negative aspects. I'm doing well on that new med the doctor prescribed. Things of that nature are recognized. I suggest that being in the health care business isn't easy, my wife was involved for 30 years and the patients with the good attitude are the ones that are remembered, not the complainers.

Ed (@njed), Valerie (@lacy2)

I'm a great believer in prepared questions. Like you, Ed, I, too, have taken myself to task many-a-time on the drive home over forgetting questions I'd plan to ask. A few weeks ago, I spoke with my neurologist's PA and offered to forward my questions in advance. The PA didn't think that was necessary. So I haven't. But tomorrow morning, I'm going to forward them anyway. And I'll Tuesday, when I meet my doctor, I'll have copies: one for me and one for him; I'm hoping that if there's a question my doctor can answer only partially while we're together, he'll look into later and reply more fully in the days following via my patient portal. That may be wishful thinking on my part, but heck, what have I got to lose?

Ray (@ray666)

Hi, julbpat (@julbpat)

Moments ago, in another reply post, I mentioned that I will forward my questions via my patient portal tomorrow morning. My neurologist's PA had told me a few weeks ago that he didn't think that would be necessary, but tomorrow––even though it's short notice––I will forward my questions anyway. As for PT, I, too, am a staunch believer in PT. A problem I was having with my last therapist––and she was an excellent therapist in almost all ways––was her inexperience working with people with PN (by her own admission). If I do PT again, I want it to be with a therapist who understands the various symptoms folks with PN must contend with.

Ray (@ray666)