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.

mstrasse1 | @mstrasse1 | Feb 13, 2020

In reply to @johnbishop "@jager5210 I’m glad to hear you’re doing better. Thanks for the feedback." + (show)

Hello John: I have ordered the protocol components and am beginning the ramp up with R ALA. About how long before I should expect any noticeable results for my peripheral neuropathy? I currently have feet and hands pains, burning, numbness, etc...

The question I have is if the Protocol 525 available at this time?
Thank You
Mike Strasser

John, Volunteer Mentor | @johnbishop | Feb 13, 2020

In reply to @mstrasse1 "Hello John: I have ordered the protocol components and am beginning the ramp up with R..." + (show)

Hi Mike @mstrasse1, the new Protocol 525 has not started shipping yet but is close to shipping according to the Facebook group's leader. I think it might be within the next few weeks. I'm looking forward to it as it means taking fewer pills/capsules - 12/day vs ~30/Day for the same supplements. Each person is different as far as the results. For me and having only numbness in my legs just below the knees, it was about 2 months before I started noticing the numbness and felt to have regressed some to around the top of my ankles. Other group members who have posted their success have shared positive results anywhere from a few weeks to several months.

Have you tried searching the group using #theprotocolworks ? This will bring up all of the posts by members who have shared their success stories. I really hope it helps with your pain sooner than later and that you can share your experience here with us.

terrydclaar | @terrydclaar | Feb 13, 2020

In reply to @mstrasse1 "Hello John: I have ordered the protocol components and am beginning the ramp up with R..." + (show)

I believe 525 will start shipping in March of this year.

Nazir Khan | @nukhan | Feb 13, 2020

Today's update from the leader of that protocol indicates that protocol 525 is expected to start shipping from 24 February

oldshep | @oldshep | Feb 14, 2020

TO ALL WHO RESPONDED TO "IDIOPATHIC PROGRESSIVE NEUROPATHY
Thank for the inputs and helpful hints.
Many of you have classic pain and numbness with your problem. ME, I have very very little pain BUT my problem is weakness esp. in legs. I do have some foot numbness but so far, i can deal with that. IF i walk up 20 steps, I am so tired at the top, I have to rest and I workout 5 to 6 days a week. It is progressing for sure but I try exercises to help

mikeoc | @mikeoc | Feb 14, 2020

Hi I have been diagnosed with small fiber neuropathy also. Went to Lahey clinic and Mass General. I got the feeling that because the doctors can not exactly explain how or why I have this condition that some how its either my fault or I am making it up they are dismissive of me. Anyway I am taking 1200mg a day of gabapentin and duloxetine x3 a day, but my best relief comes from lorazepam and asper cream and lidocaine applied very liberally during all day. I also use a tens some times but it is a pain . Do not give up some where some time someone will figure it all out ,or some doctor will stumble on a fix by accident. Stay strong .Watch a good movie, read a good book, watch some old tv shows on YouTube. Distracting my self from the burning scrapping digging pain is a big part of my learning to live with this privation to my health. Good luck to all and GOD bless

John, Volunteer Mentor | @johnbishop | Feb 14, 2020

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

Hello @mikeoc, Welcome to Mayo Clinic Connect. Thank you for sharing what helps you cope with this horrible condition. It is most definitely not your fault and you have a great attitude that will go along way to helping you cope easier. There are a couple of other discussions you might want to join in here on Connect to learn what other members are doing to help their symptoms.

> Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/
> 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/

da20pilot | @da20pilot | Feb 14, 2020

In reply to @johnbishop "Hello @mikeoc, Welcome to Mayo Clinic Connect. Thank you for sharing what helps you cope with..." + (show)

Thanks for all the info. Much appreciated

da20pilot | @da20pilot | Feb 14, 2020

Hi
They probably wont be able to find the cause. I had several factors daily alcohol, chemotherapy, low B12, high cholesterol and a couple of others. I believe it was from the chemotherapy as the time frame lines up and the pill I was on is know to give severe neuropathy. I just joined and I still learning but the people in this group are extremely helpful and they will send you lots of info on how others are treating it. You may want to look at your diet sugar intake alcohol but people with a lot knowledge will respond. Best of luck. Treatment is the main priority now in my opinion and will factor into realizing the root cause. A simple change in diet could help significantly.