Neuropathy: My Journey

I've had PN for twenty years, shortly after a spinal fusion. Degenerative disk disease, severe arthritis, and heart issues. I'm also rated 100% (p&t) disabled by the Veterans Administration, although I have never been treated for 'PN' by the V.A., only private Doctors, and have been a patient with the same local medical clinic for over twenty years! After a recent case of bronchitis, I was prescribed 'Azithromiacian', for five days, and then 'Levofolxcian'. Two days after taking the 'Levofloxcian' severe back and leg pain symptoms started. I finished the two-a-day doses, for a total of five days on that medication, and stopped taking it about a week ago. I was then prescribed a muscle relaxer and pain-killer Presnidone, for ten days. It is not helping! I'm scheduled for an MRI tomorrow. I think I may need a lawyer. None of the protocol meds have worked for PN. The pain when trying to walk is so bad I need a walker and feel like my lower body from my back down to my feet won't support my upper body weight, and I'm recovering from a total shoulder replacement in December 2024. This new pain is above and beyond what I've been living with for PN pain for twenty years. Any suggestions? I did read the drug insert package before taking the 'Levofloxocian', and called the PA who prescribed it. He said, "You won't be on it long enough for any side-effects"! When my PCP returned, he told me he would have prescribed the same medications. Who do you believe, and now what do I do?

To be truthful I have over 50 different drug allergies including Lyrica and neurotin. Anything that a doctor prescribes me I have to break down each inert ingredient. Including what’s in the capsule. My drug allergy has gotten so bad last time I quit breathing and turned purple. My husband yelled at the doctor he didn’t know it had sulfate. Yes, it was in the computer. Morphine sulfate duh it’s in the name how stupid. I am allergic to all sulfate, sulfites and sulfonamides. Put me in the hospital for two weeks because it also triggered my asthma and ended up with pneumonia.
When reading the insert for levothyroxine it is up front under neurological side effects and tells you to immediately to stop the medication. Common side effects include nausea, diarrhea, and trouble sleeping.[5] Serious side effects may include tendon rupture, tendon inflammation, seizures, psychosis, and potentially permanent peripheral nerve damage. Peripheral Nerve damage = Neuropathy dangerous drug if you already have nerve problems.
I have been screwed over so many times by doctors I don’t trust them. You should have demanded a different prescription. A PA does not know the side effects of a drug unless you have her look it up. The best thing is contact your pharmacist. They know the side effects just off of my past experience. The PA gets out their phones and google it. Your only option would be go after the PA. The attorney would ask you since you were having problems why did you keep taking it? They will try to put the responsibility back onto you. I went through a workman’s comp case and dealt with junk how they kept trying to put it off on me. As far is what they give you for neuropathy. Mine is autoimmune they are looking at IVIG therapy. I was on it as a child and it worked wonders for me. 2. Read up on alpha lipoic Acid by IV it’s been shown to do wonders according to research. Other than that the doctors tell you there’s nothing to do for it. Just things to mellow out the pain. I have also got it in my back and ribs darn does it hurt. There are a ton of scams of people wanting to sell you things that don’t work. There is one I am currently looking into. Being an RN never worked as one (I didn’t like the gossip) I am currently nitpicking one offer I heard on the internet.
It has over five different things in it. I am having to relisten to the information and write down the rest of it and research it. I also have a friend that has a degree in chemistry and I am going to ask her to research it also and see what she thinks. There’s a lot on alpha lipoic acid but this has lions mane and they talked so fast I didn’t catch the rest. They also talk about mmp-13. Interesting. Skip the word diabetic. Just focus on the rest.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5820202/#:~:text=The%20involvement%20of%20MMP%2D13,treatment%20option%20for%20diabetic%20neuropathy.

Isn’t it strange. I did not think about it when my husband hands me a skor my down fall. Then that night ouch. Yet I can eat an apple, blueberries, blackberries or orange nothing all natural sugar. There is something in refined sugar our bodies do not like.
I am a RN didn’t like my clinical rotation but graduated anyways. I was listening to this offer on neuropathy that I am researching it has over five different things in it. Then it talks about mmp-13 it’s a really interesting information. After I read up on each ingredient. I am having my friend that is a chemist look at it.

Hello! I am just learning. I never added it up until I read about it. I have had neuropathy since 2002 and now it’s bad. Some days just want to cut them off. I noticed in the States that brownies and cakes have more sugar than in Germany. We are stationed in Germany but I spend time visiting. I am learning and it does Not leave in 24 hours. Why I sure would like to know.

MMP-13 article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5820202/#:~:text=The%20involvement%20of%20MMP%2D13,treatment%20option%20for%20diabetic%20neuropathy.

I have been to 2 different Podiatrists and a Chiropractor. I get different answers. But no real answers to how I got here or what is causing it. Just labelling it as a Neuropathy. I was a runner. I ran Marathons, and trained for hours sometimes. One dr. said it was caused by running and another said that it could not be caused by over running.
I did go through a period of Anxiety. Almost debilitating. I went from being very active to just sitting all day and night. Not moving much. That is when I noticed something was wrong. I had some tingling and fuzziness in my feet and lower legs. This has been going on for a couple of years now. I just went and saw a Ortho. He thinks it may be from my back. I will now need a MRI. I get a lot of opinions but not a answer as of yet.
After trying different things, I will tell you what has made me feel much better. I take B vitamins, B12, B6, B1. And I got moving again. I exercise everyday. I walk or bike and some weights. I also use a vibration board. I massage my feet everyday or go get reflexology. I also eat a cleaner diet as many others have mentioned. I do not feel 100% but I do feel better and I my feet feel better at bedtime.
I am wondering how many people get Neuropathy but do not have a answer on why or what it was caused by.

I do not have a cause aka etiology. They believe they have it narrowed down to two different possibilities. 1. Autoimmune my esr, Ana, CRP, complement 3 are all elevated. I test negative for almost everything. You have to test 14 for Rheumatoid Arthritis and I tested 13. Really, to me that’s high enough to start treating it. I went to Boston to see Dr. Anne Oaklander and she believes Rheumatoid Arthritis, lupus or Sojourns. I also have a connective tissue disease according to my neurologist notes. The doctors now want me to go too Baltimore to be tested for seronegative sojourns.
To me it’s one of the most frustrating problems. Dr. Anne Oaklander has been studying this since before 2015 to me very little answers.
You need to go see neuromuscular neurologist (they specialize in neuropathy) and a rheumatologist. I also posted a lot of labs that Dr. Oaklander have done before I see her. If you would like to have the labs she requested I can send them to you. They are a lot.

Is diabetic neuropathy considered small fiber?

I'm not sure there is a definitive answer for your question @celia16. Here are a couple of references that talk about the topic.

"Diabetes and prediabetes (including both impaired glucose tolerance and impaired fasting glucose) frequently are associated with pure small fiber neuropathy; however, concomitant large fiber involvement is seen more often [6]."
--- Diagnosis and Treatment of Pain in Small Fiber Neuropathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/

"Does diabetes cause large fiber neuropathy?
HbA1c and the AGEs CML and hydroimidazolone are important risk factors in the development of large- and small-fiber dysfunction in long-term type 1 diabetes. Peripheral neuropathy is one of many complications of type 1 diabetes, resulting in significant morbidity and mortality."
--- Small- and Large-Fiber Neuropathy After 40 Years of Type 1 Diabetes: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3816884/

You have to have a biopsy to be tested for small fiber neuropathy.
Yes, diabetics can get it. I am not diabetic.
I pray no one gets it. It affects the organs. Bladder, kidneys, gastroparesis and heart. The cardiologist and electrophsiologist can’t control my blood pressure it’s either high, low or perfect. I spent two weeks at 159/99 headaches everything. They gave me blood pressure medicine then all of a sudden bottoms out 90/60 nausea once again and now it’s back to normal. I also have arrhythmias (heart beats too fast or too slow). Once diagnosed with cardiac autonomic neuropathy called CAN they give you eight years to live. I am four years in we shall see. My opinion is only God knows when you are going to die. We are having problems controlling the arrhythmias the medication I am on no longer working. Trying to find something new. The doctor said it really makes it difficult when your nerves are not functioning right.