Neuropathy in feet and limited toe movement?

@plbelanger

I know how frustrating it can be to wait for a call back.

It's a mixed blessing to have normal test results when you're hoping that they will tell you something. How are your toes? Some things we take for granted, so when various parts of our bodies don't work right, we come to appreciate what we do have.

I also have sfpn, and my toes hurt continually. I'm able to push down with them, but no other motion. I learned last week that I have spinal stenosis, which is squeezing the cluster of nerves that are in my spine. That may account for some of my pain. I won't know just how much until I have surgery to make space for the nerves.

When I was a boy, I remember visiting my grandparents, and in their church I was amazed by the organist. She was born with no hands, so she used her feet and toes instead, including playing the organ - playing the keys, not just the pedals.

What questions do you have for your doctor? I always have a list of things I want to talk about. Even with a list, I sometimes forget things. I could blame old age, but I've been a chronic forgetter all my life. Evernote on my phone is a real help for me.

Jim

@plbelanger Hello. I understand the mixed feelings and emotions negative test results can create....there is still an open door on diagnosis, and waiting to find out the next step can be stressful. I was once told by my Drs. office to call when the matter is more of an urgent nature (or very important to me) verses using the portal. Many times my portal message was left hanging in the air so, I learned to call on certain occasions. Good luck and I hope you are responsed to in a timely manner. Best wishes for help and answers.
Rachel

Thanks guys for the advice/info. I have a followup in September with the neuro. It's just a been a frustrating experience trying to get answers this year. It took 4 months just to get an appointment with a neuro then COVID delayed it by another 2.5 months. Now I have to wait till the end of September to speak with him again unless I get a response from the patient portal. I understand this is something I'll have to live with it but it would just be great to have an answer as to why I have it to begin with. My question for the doctor was simply what the next steps are to figure out why I have PN. Prior the PN diagnosis I did have an MRI of my lower back done last year where they were looking for a pinched nerve to see if that was a cause but that wasn't the case. The doctor did however tell me I do have degenerative disc disease and then she was the one to order the EMG/NCS test which came back with PN.

@plbelanger are you using the Mayo Patient Portal? I believe their goal is to respond to secure messages within two business days though, depending on the question, you may get your response sooner. I've usually gotten responses within 1 day, sometimes sooner.

Connecting through Secure Messages: https://connect.mayoclinic.org/page/chest-surgery/newsfeed-post/how-to-connect-with-your-care-team/

No I'm not. I'm seeing a local doctor in my area.

It might not hurt to call the office where you make appointments and just ask them what their policy is for responding to messages on their patient portal.

@plbelanger I have to agree with John, there is no good reason why you shouldn't be getting a timely response to your question. Our GP will either answer, have his nurse answer or someone else who can find out the answer from the doctor or nurse. These portals are your lifeline to your doctor and if they are not going to respond why have them? I'd call as John suggests and if you do not get a satisfying answer from them bring this issue up next time you are face to face with your doc. Best, Hank

So finally heard back from the doctor today and he labeled it as Idiopathic PN so just pain management in my future now.

I have the same experience.

@plbelanger, @jimbotch you might want to read the following discussion where other members have shared their neuropathy journey and what has helped them -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/