Idiopathic Progressive Polyneuropathy: How to find a specialist?

Posted by oldshep @oldshep, Feb 12, 2020

I was diagnosed about 2+ years ago. I had local testing, then a visit to Johns Hopkins. They cannot find the root cause and I continue to go downhill. Has anyone had a similar problem or does anyone know where you go after no one can diagnose and find the root cause?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Jim, Volunteer Mentor | @jimhd | Feb 14, 2020

In reply to @da20pilot "Thanks so much! I posted about the appointment I had today it's crazy the conflicts I'm..." + (show)

@da20pilot How's the depression, Tom? My experience has been that pain elevates my depression, and depression makes me hurt more, and so on around the vicious circle. I'm assuming you take an antidepressant. Would talking with the psychiatrist about it help? Perhaps he/she would give you another medication that would enhance the one you're taking, at least to help you get through this really difficult time. And it's difficult on several levels. There are meds that are used this way. I took Abilify for a while, but it didn't produce the desired result. I found Mirtazapine a few months ago and it's really helped. Just a thought.

Jim

Rachel, Volunteer Mentor | @rwinney | Feb 14, 2020

In reply to @mikeoc "Hi I have been diagnosed with small fiber neuropathy also. Went to Lahey clinic and Mass..." + (show)

Thank you for your encouraging words. Be as well as well can be.
Rachel

maryv449 | @maryv449 | Feb 16, 2020

Has anyone looked into spinal stenosis being one of the reasons for neuropathy? I was doing some research and ran into this and other articles on this subject. https://www.umms.org/ummc/health-services/orthopedics/services/spine/patient-guides/spinal-stenosis?fbclid=IwAR0Cp1sncTjuDmK2BkHkxZ-3YHnz8TTrVyIiQ-OXtQp-I2sKyc47koIIDy. I kept getting nowhere with the tests that I have taken and started doing research on my own. I am going to book an appointment neurosurgeon that is familiar with the new procedure. I will let you know how I do. BTW, I have spinal stenosis and degenerative disc disease.

John, Volunteer Mentor | @johnbishop | Feb 16, 2020

In reply to @maryv449 "Has anyone looked into spinal stenosis being one of the reasons for neuropathy? I was doing..." + (show)

Hi @maryv449 -- I think any kind of pressure, pinching or damage to a nerve can cause neuropathy. You may also be interested in another discussion on Myofascial Release Therapy that may help with with pain in situations where a nerve is being pinched or has pressure on it. @jenniferhunter may have some suggestions for you on the subject.

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

maryv449 | @maryv449 | Feb 17, 2020

In reply to @johnbishop "Hi @maryv449 -- I think any kind of pressure, pinching or damage to a nerve can..." + (show)

Thank you so much for the information. I am going to read it now. Right now I feel that I am just putting bandages on something that needs attention. I bought a Lo Bak Trax to work with decompressing the spine. My brother in law has found relief with it. To go to a chiropractor for spinal decompression is unbelievable in price.($200-$300) Plus they string it out to many visits, none are covered by insurance. May God bless you and the group in our quest for pain relief and find a cure.

stanleyw | @stanleyw | Feb 17, 2020

A neurologist discovered my neurophy problem when asked do I take Vitamin B-6. I do and take 10mg daily for the past 10 years. A blood test was ordered and result was a 96 when it should never be over 20. The neurologist said to quit taking Vitamin B-6 which can cause neurophy . She said a person gets sufficient B-6 in foods. It was a doctor 10 years ago that prescribed vitamins which he sold. The doctor is now out of practice.

Robin | @birdierobin | Feb 17, 2020

In reply to @stanleyw "A neurologist discovered my neurophy problem when asked do I take Vitamin B-6. I do and..." + (show)

Don’t you just love being told one thing and the opposite later sometimes back to the original you never know what to do

margaretob | @margaretob | Feb 18, 2020

Saw a NEUROLOGIST and and ER DOCTOR...got Gabapentin and aspirin with caffeine.IS helping ....so far...no cure...M.

lioness | @lioness | Feb 18, 2020

@margaretob I'm glad that Gabapentin is helping you Watch out for side effects it was helping me for a long time then one day dizziness , headache and anger issues I told Dr she said to just back of for awhile then start slowly .I don't know if I want to chance it glad for you and Lisa

maryv449 | @maryv449 | Feb 20, 2020

In reply to @stanleyw "A neurologist discovered my neurophy problem when asked do I take Vitamin B-6. I do and..." + (show)

Sounds like the quack I went to, he prescribed "the Remedy" and it was $80 (sold by him of course) and was Vit. B6. Luckily, I only bought it the once and it did nothing. They called and wanted to know if I needed a refill, can you believe it? They tried to convince me that I needed to take it 3 months to find out if it helped.