Why do I have all symptoms of neuropathy but Dr can not detect it

Welcome @queeniep69, Sorry to hear you have developed neuropathy from your chemotherapy treatments. You aren't alone as many members have shared their experience with chemo-induced neuropathy. It might be helpful to scan through the discussions and comments from other members to learn what they have shared - https://connect.mayoclinic.org/search/.

Here's an explanation of why the EMG test and nerve conduction tests are not positive for neuropathy for chemo-induced neuropathy.
"The diagnosis of CIPN can be established by clinical history and by development of symptoms and signs attributable to neuropathy. Neurologic electrodiagnostic tests such as nerve conduction studies (NCS) and electromyography (EMG) are used to evaluate the peripheral nervous system, but in the case of CIPN they often lack the capacity to detect changes in otherwise clinically present neuropathy [15,17]. This derives from the limitation of NCS being able to detect changes only in thick and myelinated fibers [17]. Overall, CIPN is clinically characterized by the appearance of tactile symptoms, initially in distal parts of the extremities, progressing to more proximal parts."
-- Chemotherapy-Induced Peripheral Neuropathy (CIPN) in Patients Receiving 4–6 Cycles of Platinum-Based and Taxane-Based Chemotherapy: A Prospective, Single-Center Study from Kosovo:
https://pmc.ncbi.nlm.nih.gov/articles/PMC9443419/
If you haven't already seen these resources, I thought they might help you learn more about the condition and what can help manage the symptoms:
-- Chemotherapy-induced Peripheral Neuropathy (CIPN) Pocket Guide:
https://healingworksfoundation.org/resource/chemotherapy-induced-peripheral-neuropathy-cipn-pocket-guide/
-- Exercise for CIPN: https://www.foundationforpn.org/exercise-for-cipn/

Have your doctors offered any suggestions for treating or managing the neuropathy symptoms from the chemotherapy?

Same thing happened to me. EMG didn’t show much of anything. Neurologist said you’re get used to it.

Quenie, I have read that low B12 causes all your symptoms. Alcohol stops absorption of B12.

Thank you

Hello Queeniep69

Sorry to hear about your struggles and pain. This is really challenging not only physically but also puts massive strain on your psyche.

Your symptoms sound very similar to mine. Afer years of searching I was finally diagnosed with small fiber neuropathy. As John had commented already many pain related neuropathies cannot
be diagnosed with the usual NC and EMG tests. However, more and more chronic neuropathy pain patients are being discovered to have small fiber neuropathy. This is being tested through skin biopsy.

Dr Ann Louise Oaklander is a leading expert in SFN.

There is a very informative youtube video called "A name for the pain". Maybe you are interested to watch.
Perhaps you also want to consider testing for SFN.
All the best!

Agree that you need a second more extensive testing
for your situation. Neuropathy is likely from your chemotherapy. There are better tests available.
Small fiber is likely. There is an easy skin test that
can help answer your concerns.

Qeeniep 69. Sounds bad. I looked up effect of chemotherapy on myelin.
Yes it removes all nerve insulation. Are you taking plenty of B12 to restore it. Best form is METHYLCOBALAMIN.
Look up how alcohol stops B12 absorption. I became aware after suffering trigeminal neuralgia. B12 fixed. Will take ages in your case.
Good luck

@pennycurious1
What do you do if you have small fiber neuropathy? I’m being tested for it in February with a skin biopsy.

This isnt my story but someone i know did chemo and lost all ability to walk. So its not totally uncommon that it happens. Chemo effects everyone different and can effect unwanted areas. Sorry you are having this problem and hope that it resolves its self

@debbiehirsch I have CIDP, Chronic Inflammatory Demyelinating Polyneuropathy, or small fiber pn. It shows up for me on all the tests. As for your question, what do you do, there are many things people do for pain relief, and what helps one person may be ineffective for another. Unfortunately, there's no single answer.

I have intense pain in my feet and ankles, and take a few meds to try to make it better. Hizentra is an immuno globulin that I give myself once a week by subcutaneous infusion. I put Lidocaine cream on my feet, mostly at bedtime, to numb the pain so I can go to sleep. I take Tylenol and Meloxicam, but they are more for arthritis. I have experimented with insoles and have them in all my shoes. If bedding causes pain, I have a blanket lifter that makes a tent for my feet. I never walk barefoot! Some people soak their feet in cool water. I discovered that cold, ice water is painful.

All the things I've listed are based on the assumption that you have foot pain. Not everyone has the pain element. Time will tell where your sfpn takes you. I wish you well.

Jim