My neuropathy is chemo-induced. Is there a different spot for side effects of over-doses of chemotherapy?

Hi @steeldove, I hope they are able to find some possible treatable causes for you. Best of luck and I hope you let us know after your appointments in August.

John

Hello @eurosis and welcome to Mayo Connect.

I see that you are interested in a discussion regarding chemo related neuropathy, is that correct?

Here is a discussion group about that very topic:

– Chemotherapy-induced neuropathy: What helps get rid of it?https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/

I’d like to introduce you to other members who have peripheral neuropathy due to chemo. Please meet @pedie @crystalgal @pwarren @allisonsnow @lisamaria @caf132 @greenville50 to name a few.

Teresa

Hi John,@johnbishop

For those who are less-sophisticated medically-speaking, would you like to explain what idiopathic means in comparison to a disorder that is not idiopathic?

Teresa

Hi Teresa @hopeful33250
I would be happy to give you my two cents coming from a nowhere close to being sophisticated medically-speaking person ☺

What the medical world is telling us -- idiopathic: relating to or denoting any disease or condition that arises spontaneously or for which the cause is unknown.

What I heard from an 80+ year old neurologist Dr. Kennedy from the University of Minnesota at a MN Neuropathy Association 20 year celebration meeting:

My favorite speaker of the day. All of the speakers had a Q & A after their talk and one of the burning questions of the day was how many people are affected by neuropathy in the U.S. and around the world. Pam and Dr. Walk had both said they thought the numbers were around 20 million in the U.S. and up to 128 million in China. Dr. Kennedy said he would take exception with his younger counterparts and said it’s more like 100% if you live long enough. Since there was some discussion of idiopathic PN, Dr. Kennedy asked if we knew how the diagnosis is made for idiopathic. Got my best laugh of the day when he told us it got the name from the idiot neurologist who diagnosed it.

Dr. Kennedy went on to talk about his research work on developing a tool he would like to make available in every GPs office to easily test for neuropathy. More information can be found on his website:
-- http://kennedylab.med.umn.edu/

So there you have it in a nutshell - some idiot neurologist coined the term idiopathic. ☺

Happy Saturday - hope it's a pain free one for all my PN and chronic pain friends.

John

Hello John. Yes, in addition to my numbness , I have chronic 24/7 pain in my feet and hands. To try and treat the pain I’m taking morphine and oxycodone. I also have a spinal cord stimulator implant. I also have monthly B 12 injections and take alpha lipoic acid , magnesium, rx omega fish oil. Diet changes too. All of these just seem to be chasing the pain. It’s still always there from the second I wake up until I fall asleep. Every day. Ugh. I’m retired on SSDI no at 57, so I don’t have to work any more. Not that I could anyway. This has definitely changed my life. I used to be very active. Not so much now. You have to pick and choose your activities much more. Hopefully it won’t keep spreading, but that hasn’t been the pattern.

"some idiot neurologist coined the term idiopathic"......because he/she was too lazy/busy to really listen carefully to the patient and to explore avenues suggested by the patient who lives in that body.

IVIG is an immunoglobulin infusion. It can be very effective in reversing symptoms in some autoimmune and inflammatory PN cases. There is a study about to recruit participants being run by Dr. Oaklander at MGH to see if IVIG works in people with small fiber PN and no clear autoimmune or inflammatory markers. In a non-random study with 55 patients 74% had an improvement in symptoms after IVIG. IVIG is currently only covered by insurers for about 15 named diseases. I am fighting with BCBS for a chance to try IVIG.

Where are MGH and Oaklander located. Two incidents of cancer plus chemo and radiation probably caused my PN.

Massachusetts General Hospital and Dr. Louise Oaklander are in Boston.