Neuropathy or CIPD???

@oliver8112000
Did they do a small fiber neuropathy skin punch biopsy? The multiple rounds of chemo may have affected the small nerve fibers. Did you have a MRI of your cervical and lumbar spine to see if you have any spinal cord/nerve compression? If the EMG is abnormal, you should find out exactly what that means. EMG can tell if a nerve is compressed and causing radiating symptoms to arms/hands and legs/feet.

Hello @oliver8112000, I'm not a doctor but from what I've read chemotherapy treatments can cause neuropathy Chemo Induced Peripheral Neuropathy (CIPN) vs Chronic Inflammatory Demyelinating Polyneuropathy (CIPD).
The GBS/CIDP Foundation has a good video on sorting out your diagnosis and treatment - https://www.gbs-cidp.org/cidp/.

There is also a discussion on CIDP that may be helpful to learn more:
-- CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/

I have CIDP. It was not diagnosed correctly for 2 years after symptoms started, tingling and numbness in lower extremities. I was on IvIg twice and prednisone once. Neither helped. I was then given VyGart-Hytrulo - no improvement after 14 weeks so it was discontinued. My condition has gotten worse over time, mainly fatigue, loss of strength and balance issues. I am being treated at the University of Pennsylvania, one of the GBS/CIDP Foundation International Centers of Excellence. I am now in a drug trial for Riliprubart.
https://www.sanofi.com/en/media-room/press-releases/2024/2024-06-25-20-30-00-2904145
My CIDP is idiopathic - no known cause
There is a newer trial for a drug called Captivate
Good luck finding the help you need.

Wow. No they did not. They said next step Spinal Tap. I will definitely message both Doctors on Tuesday. I never heard of those tests. Were you diagnosed with CIPD but thought it was just Neuropathy? As I said in my original message, my Neuropathy started almost 3 plus years after Chemotherapy Treatment for BC. Never had Neuropathy before. Came out of nowhere. I also have no Reflexes. Thank you so much. 🙏🏻

Thank you. I know Chemotherapy can bring on Neuropathy. Generally during the treatment. Rarely will it show its face almost over 3 years later out of nowhere. I never had Neuropathy in 1981 for my Leukemia and Bone Marrow Transplant with Total Body Radiation or in 2007-2008 for Breast Cancer years following I was at several of my Niece’s Weddings dancing in 5”,
yes 5” heels. Truth. Now slippers. Not fun. So much to take in. ☹️

Oh my goodness. Sending prayers your way. I am in NJ. Not too far from University of PA. Did you have a fiber skin punch biopsy along with an EMG initially? I did not . Just abnormal EMG. Now they say next step Spinal Tap. Very confusing. I am only 64. Just debilitating as you know. I feel for you. As I said you are in my prayers and if you are up to it please keep e posted. 🙏🏻🤗😇

Hello: I have had multiple EMGs, 4 on arm, 2 on leg. I also had a muscle biopsy (negative). Spinal tap(now referred to as Lumbar Puncture) - yes - that test revealed excess proteins in spinal fluid (abnormal and an indicator for neuropathy) A SPECIAL warning. If you have to get a lumbar puncture, demand to get it with radiology guidance. It is very awkward and distressing to have this procedure done without it. Keep pushing for the best care and don't be afraid to be a strong advocate for your health

@oliver8112000
I was not diagnosed with CIDP. I was diagnosed with idiopathic small fiber neuropathy (started with burning and pins and needles in feet) and also congenital narrow spinal canal causing early spinal stenosis, degenerative disc disease, cervical myelopathy (spinal cord compression/flattening injury), and neurogenic claudication causing all sorts of symptoms. I had daily headaches, neck/shoulder pain, tinnitus, arm/hand weakness/numbness, bladder control issues, lower back/hip/buttocks/legs/feet pain/numbness/weakness, walking and balance issues, etc. I had 2 cervical spine surgeries, 1 lumbar spine surgery and carpal tunnel surgery on right hand 2022-2025. The decompression and fusion surgeries in my spine helped relieve some of my symptoms but have some permanent spinal cord and nerve root injuries due to delayed diagnosis and treatment.

I hope you get more answers to your questions on what your test results show, why they are doing or not doing certain tests, if tests are needed/risks, etc.

Did they do extensive bloodwork to check for neuropathy causes and to rule out things? Are you working with a hematologist/oncologist to do your bloodwork? Neurologists do certain bloodwork but a hematologist may be more thorough for potential causes to your symptoms.

Just to clarify, the IVIg, prednisone and Vygart-Hytrulo were treatments, not tests. Good luck

Hello again, you have really been through so much. Funny, with the EMG tests, the last one they did I think it was on 8/14, they did not do my arms. I don’t think. I can’t remember if they did them in 2023. That is strange. I have had Spinal Tap before, (seizures). I am thinking after I get the results and depending what they say I am thinking of maybe contacting University of PA for an opinion. I have what they call ‘late effects’, many ailments from all the Total Body Radiation and Chemotherapy I had in 1981 to treat my AML Leukemia. Long list. I think this should have been addressed in 2023 when the EMG came back abnormal then. I also just had Left Carotid Artery Surgery 8 weeks ago tomorrow. It went from 50% blockage to over 75% I 8 weeks. I have never been so terrified of a surgery in my life. I know too well you have to be your own advocate. Thank you. 🙏🏻😇