Living with Neuropathy - Welcome to the group

Thank you for this forum. I have not advised my family of my diagnosis of idiopathic progressive polyneuropathy. Seems I am trying to brush it off, but pain is a glaring constant reminder. I attend appointments by myself due to Covid. My thoughts are with each & everyone experiencing this complicated ailment.

Hello @fuzzy1southernga, Welcome to Mayo Clinic Connect. You have come to a great place to learn more about your condition and how to become a better advocate for your health. There is another discussion that you may want to read through and learn what other members with your symptoms have shared.

IDIOPATHIC PROGRESSIVE POLYNEUROPATHY: https://connect.mayoclinic.org/discussion/idiopathic-progressive-polyneuropathy/

You mentioned in your first post having polyneuropathy along with spondy. Do you mean Spondylolisthesis?

Thanks for reply! Yes, sciatica, slipped vertebra & facet joint disease, L4 bulge, L-4-s1 pretty much disintegrating

Thanks for link, will read now!

I'm 79 yo & have numbness in feet & slightly in hands. Have had back issue for yrs. GP referred me to Neurologist but virus halted that. What can I expect when I do go?

Hello @maylily, Welcome to Mayo Clinic Connect. You will notice we moved your post to the Living with Neuropathy - Welcome to the group discussion so that you can meet other members who have similar symptoms and learn what they have shared. The Mayo Clinic website has information on the diagnosis and treatment for peripheral neuropathy here: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067.

You may also be interested in reading through the following discussion:
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Has your GP lined up any tests prior to getting your appointment with the neurologist?

Orthopedic surgeon lined up with neuro last week. I had the nerve conduction test, emg &!” Many labs. Diagnosis was progressive polyneuropathy, from here I go back to surgeon. He will review neuro’s final report & review my mri’s, visits, CT’s & xrays. I feel a little lost, as if I should be more proactive now, just have to be patient.

@fuzzy1southernga You mentioned sciatica, slipped vertebra & facet joint disease in your previous post. Are you meeting with your orthopedic surgeon to discuss a surgery? I know you mentioned being in a lot of pain. Have you heard of Myofascial Release Therapy? There is a discussion on Connect that may offer some helpful information.

Myofascial Release Therapy (MFR) for treating compression and pain:
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Thanks John! No I have not, I have already learned so much from your forum, this is a fantastic site! Y’all are so helpful!

@fuzzy1southernga

This has been a good forum for me, as well. I've had idiopathic small fiber peripheral polyneuropathy for 7+ years. It was diagnosed in 2013.

Sometimes I prefer to see a doctor alone also. I haven't been able to see the neurologist since February and my next appointment with her was bumped 3 months out. When doctors were seeing patients again I had my appointment moved back several weeks, but since then I've been called twice to change the date. So now it's back to the day they bumped me to, at the end of June. If she weren't such a good doctor I might be looking for a different one. The more they postpone it the worse my pain is.

What areas are affected by neuropathy? Mine started with pins and needles in my feet and legs, then pain was in the balls of my feet, but over the past few months it's spread to include the tops of my feet and ankles, and I feel it moving up my legs. I'm a person who wants to have life organized. That's not possible with neuropathy because every person has their own unique progression. The neurologist can tell us that it is a progressive illness, but they can't predict a prognosis.

You said that the pain is bad at night. Are there other times when it flares up? Every time I lie down my feet jump up to at least 8. Same thing with the recliner. Are there any things that you've found that ease the pain? Have you tried many medications? I hope you will hit upon the right one sooner than later.

I had a Burst DR spinal cord stimulator implant in June of 2015. It was wonderful! I had 80% pain reduction. It continued to be effective for a year. During the second year I had to get the settings adjusted every 3 months. Since the start of 2018, the adjustments have been less and less helpful. I turned it off for the month of March, and then turned it on again, and I could feel no difference. Again, we are each unique in how we respond to the multitude of treatments. For some people, the SCS implant is effective much longer, while others don't find it effective at all. We just move on to the next treatment options.

Jim