Member Neuropathy Journey Stories: What's Yours?

It's unclear exactly when it started. It seems like the earliest could have been 12, but I didn't start to see a pattern until 19 between then and 25 I saw a bunch of specialists about all my different symptoms and got a long list of diagnosis's.
My symptoms were burning and tingling in my hands and legs occasional loss of feeling that would very in time (minutes to weeks). The loss of feeling could be from waist down, my whole left or right side, or one/both arms. Elevated resting heart rate, and complete loss of feeling in finger tips and sense of hot and cold in palms. At 24 I started to think it was MS because my cousin has it and we have all the same symptoms so I made an appointment at MUSC. Almost a year later (2019) I got in, they did every test under the sun had me see a few other specialists. Then they did the skin punch biopsy and found ISFN. I was passed off to the neurologist over SFN there. Since then I haven't had much help since I can't take steroids and things like gabapentin don't help with the pain just makes my memory worst than it already is. I've been on metoprolol, stopped because I'm allergic. Tried gabapentin and things like it but didn't help. I've tried a bunch of different antidepressants and anxiety meds but they don't really do anything. Currently I'm on Librium and trying to find something else because my symptoms are just getting worse.
If my best friend said she had neuropathy I would tell her, look at us over achieving the rest of our school again and beating them to the wheelchair stage, it's not a bike club but we're still on wheels. We have dark humor. Then I would say invest on safety measures handrail in shower ect. Don't take baths. Don't shower home alone or without your phone in reach. Build up muscle strength, mainly core and arms so if you do fall because your legs go out you can drag yourself and pull up your weight. Listen to your body. Walk as much as you can, and call me on the days you feel like down because of it.
I was a cosmetologist. Got my license in 2016 and didn't renew in 2019 because my symptoms were so bad I couldn't work in a salon. I continued doing hair for my family friends daughter BF and myself. Two weeks ago I did my last haircut and color because I can't stand up long enough or hold my arms up long enough without causing pain. I haven't been able to drive for months now because I can't tell how much pressure I'm putting on the petals. I gave up soccer and tennis a long time ago. Now I write, read, play Minecraft, and spend time with my daughter.
My life has changed drastically. Work is non-existent, I've had a couple jobs since the salon but they only lasted a few months before my SFN got in the way. My last job lasted almost a year and was an at home one which was perfect but they pushed me to quit almost a year ago because a Dr wouldn't send a release for work letter for my LOA. Since then I haven't been able to find anything. At home I do my best to keep a schedule but it gets thrown off a lot. Socially right now I'm pretty cut off since I can't drive. My mom and friends live 40 minutes away. They come over when they can, but it's not that often. I talk to some of the other parents at the bus stop but that's about it outside the house.

It has been a 4 year journey filled with troubleshooting and misfires before landing on my new normal of Small Fiber Polyneuropathy. I joined Mayo Connect 1year ago because I was lost and needed support of others who understand my doubts, fears and were experiencing similar diagnosis.

My downfall began August of 2016 (age 46). I had unusual neck and head pain from painting. My PCP sent me to physical therapy, no relief after 1 month. On to acupuncture for 2 months, nothing. Xrays were of no value. Jan 2017 my MRI revealed 1 moderate cervical herniated disc and 2 bulging discs. Ah hah, the answer! Wrong. 2 spine surgeons agreed surgery was not the answer and sent me to Pain Management. I was diagnosed with occipital neuralgia and cervical spondylosis. I worked with 2 different Drs because the first PM Dr. could only provide help to my neck while my head needed help too. This resulted in a total of 4 cervical and occipital nerve blocks as diagnostic tests (these are preliminary to Radio Frequency Ablations). From that point, July 2017 through January 2019 I received 10 Radio Frequency Ablations on my neck and head. Burning off the nerves provided initial relief but, eventually petered out. I so badly wanted to be cured and get back to work. I kept receiving these intrusive procedures and they became physically harder to take.
I developed Neuritis which felt like fire works in my neck and my shoulders now were becoming decrepit. I lost ability to use my arms and shoulders properly. I believe (and so does my neurologist) that these ablations were having repercussions on my body and causing nerve damage. I was prescribed short term Gabapentin eventually followed by Lyrica and a few round and rounds between the 2 drugs due to insurance coverage.

During this time, headaches and severe migraines were playing a role but again, my head pain was more than migraine. Occipital neuralgia supposedly. After 2 neurologists,…chronic migraine was diagnosed and I began botox injections every 3 months. I felt like a HUMAN PINCUSHION for 2 years straight between 40 botox needles at a time to the head plus all those God awful needle entries to my head and neck from RFA's I then began the newly introduced migraine monthly self injections of Aimovig followed by Emgality and now Ajovy (they lose effectiveness for me after 8 months or so).

During these times, stranger things began throughout my body. Back and hip pain had begun developing. Toe and foot pain, along with hand pain. These pains all lead me to Orthopedic Drs. who x-rayed and said nothing's wrong, I must have sprained something. I wore a boot for the foot I couldn't walk on, a hand brace (from weeding too much – what? who gets a weeding injury). I had an MRI of my back…it showed a mild disc protrusion. Yeah, so what. Just like my neck, nothing major to be effecting me this way. I received epidurals in my back and started PT again. The common theme began to reveal that nothing majorly, structurally, was wrong with me. I felt too young to be falling apart to all these unexplained, tormenting pains. I myself, decided to go to a Rheumatologist to rule out fibromyalgia. The Dr said I have mirroring symptoms but, not fibro and suggested my Lyrica dose be increased.

January 2019, I had just had my final rounds of ablations and my pain was exacerbated from them, more than ever. In retrospect I believe I made a big mistake having too many and pushing for the reason of getting my life and job back. It backfired on me. The Fall prior began oddities in my body such as tingling in my hands. Pins and needles all over. My body was not neurologically right. In addition, I was exhausted, having palpitations and shortness of breath. These symptoms slowly grew and took over my body. I managed miserably to get through the holidays then went to my Neurologist in January. I explained through tears and frustration that something was wrong neurologically and if he couldn't figure it out I was going Mayo Clinic. It was finally then that he tested me via skin punch biopsy and diagnosed me with Small Fiber Polyneuropathy. Ahhh hahhhhhh, finally! I was not going crazy, it was not all in my head, there was a name for this chaos in my body.

And so it began…a thorough and extensive workup to find an underlying cause. A plethora of blood work and genetic testing. I had already had MRI's on my brain, neck and back. I had bloodwork drawn prior for SED rates when I was trouble shooting but, this testing lasted for 2 months. Immediately landed on a B12 deficiency. I began B12 injections every other week for months until my level regulated. I slowly had more energy and could breath better without my heart racing.

Now, we work on regulating and controlling nerve damage and pain . My neurologist says maybe 2 -3 years nerves will regenerate. It's a crap shoot. I stick with Lyrica, tried Cymbalta for over a year then weaned myself off because I had memory issues. Throughout my pain journey, I began taking Nucynta until my new insurance wouldn't cover it. I moved to Norco (hydrocodone) and added medical marijuana for when hydrocodone is not enough.

My body was increasingly feeling sunburned, pins and needles, electric shocks in my head and face, sharp unexpected pains throughout, burning and weakness. By spring of 2019, my legs started to die and walking became restricted. This was and still is my biggest fear. At the same time, with my body in a state of flux, I developed Chilblains on my feet with tenacious itching, red painful sores and my feet were flaring between red hot and blue, purple, grey colors. My neurologist claims it was from neuropathy. This bout brought me to a dermatologist, vascular and cardiologist for ample testing (echocardiogram, CT scans) and ruling out any other misfires. After this episode settled, my Neurologist suggestion lidocaine infusions to control pain. I sat for 5-6 hours in the apherisis unit of my local hospital every Monday for 5 months. Lidocaine is a slow drip infusion that increases dose based on body weight. I was "in it to win it" (similar to my radio frequency ablations) but, it was a failed experiment for me and offered minimal relief. Others receive benefit.

I also had a spinal tap to rule out autoimmune diseases. I do not have any, thank goodness. However, the spinal tap left me with a ferocious spinal headache which landed me in urgent care followed by the ER and needed a cocktail to stop the pain. Never in my life have I experienced something so painful. This all lead me to seek the help of a chronic pain psychology for 2 months. I needed help but found she wasn't the one to help. I got nothing from her. I am fortunate to depend on family and friends and Mayo Connect for my mental health support.

My suggestion to anyone with peripheral neuropathy or symptoms….please do your research and gain knowledge about your body. Be your our advocate. I learned the hard way that we're kind of on our own out here. Drs can only take you so far and dont have the time to care as we want them to. It's very important to find a good PCP (primary care physician) and establish a relationship. They will lead and direct to the best of their abilities. My PCP is wonderful! He is my hydrocodone prescriber. He recommended medical marijuana for my comfort. He wrote my disability letter and qualified me for long term disability both through my job and Social Security. I know he's got my back. I also take a supplement protocol, try to eat healthier, and keep active as best I can and practice mindfulness, breathing techniques and meditation. I also benefit from weekly myofacial release therapy. In June I will attend Mayo's Pain Rehabilitation Program for 3 weeks

Living with peripheral neuropathy in a constant battle. A 24/7 job. It takes mental strength and tenacity to not be defeated by it. It takes a village, if you will, to have all hands on deck, by way of medicine, mental health, holistic approaches etc… I say I still work but, no longer get paid. I'm sorry for the length of my story but, it was therapeutic for me and I thank you for reading it. I'm happy to help further should anyone need.

Be well-
Rachel

John, I have not been on the Mayo site for over a year, but in scrolling through today something caught my eye, then I lost track of it. You mentioned to someone who wrote in about where to report suspected side effects of the Shingrix vaccination. I have never seen such a site.

I believe I developed simple Neuropathy after my first Shingrix shot and have not gotten a second one. My neuropathy is in the bottom of the toes, feet and during the night my calfs. In 2019 and 2020 there did not seem to be much reported about association with Shingrix. Chicken pox and shingles are nerve root conditions so there seems to be a possible connection between Shingrix and neuropathy.

Please let me know what you know. MA

John, fir some reason the daily emails from connect has stopped on my email. Has something changed on the Mayo end? Thanks.
Cathy

John, fir some reason the daily emails from connect has stopped on my email. Has something changed on the Mayo end? Thanks.
Cathy

My journey started over 5 years ago. (Currently not diagnosed, waiting on biopsy). It started with tingling in my left arm that went to my whole left side in one day. ER visit gave no insight other than high blood pressure. Hard pill to swallow since I was only about 39. My tingling went away in a day or so. Many months later I experienced tingling much more severe limited to my forearms and hands. Some pain included. I thought it was due to the work I was doing at the time. That lasted months. It eventually went away for quite some time. In 2020 I started experiencing pain in my hands. Doctors ruled out arthritis and carpal tunnel. Pain continued but then came the tingling again. I started seeing a neurologist after no luck with my primary doctor. By then it had been a year and the tingling also went to my legs. I have had tingling every day, in varying intensities in my arms, legs, hands, feet, and sometimes face for almost two years straight now. My neurologist ordered an MRI to rule out MS. At the time I got the results for that I was also diagnosed with Melanoma. My MRI showed a large mass in my neck so my neurology journey was put on hold. I ended up with an oncologist, pulmonologist for spots in my lungs, and an endocrinologist and surgeon. Turned out the mass was just ectopic thyroid, completely unrelated to my melanoma or neurology journey, and the lung spots magically disappeared! I’m now back at the neurologist and have been waiting months for a biopsy for small nerve neuropathy. I’m being told they can’t get the lidocaine so I can’t get the test. I have an appointment with a different neurologist in October in hopes to finally get the biopsy. I stumbled upon this thread and read @kyc117 story and was shocked how similar her story is to mine. Like her, I also keep busy because the more I move, the less I feel it. I feel it most when I’m at rest. I don’t know if my pain is related to my tingling. Or if my tingling even is small nerve neuropathy. Neuropathy seems so different for everyone. I have had EMG testing which all came back normal. I feel like a completely healthy human otherwise and my blood work suggests that as well. I don’t want my tingling to be neuropathy since there is no cure, but I do wish I could have a diagnosis as it is complicating life to live with tingling with some pain and not know why. I have been following these posts for awhile and figured it was time to share my story up to this point. I will be sure to follow up after I get the biopsy.

Welcome @jessz, Thanks for sharing your story. It can be frustrating to say the least when you are struggling to get a diagnosis. Neuropathy can have so many causes and . I'm happy to see that you can relate to @kyc117 and the story she shared. Hopefully your doctors can rule out neuropathy and figure out a treatment plan that helps.

It sounds like you have been doing your research. It is always helpful to learn more about your condition, if for nothing else it can help ask better questions of your doctors. Here are a few sites you might find helpful:

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You mentioned you have an appointment in October with a new neurologist. There is another good site that has some tips on planning your conversation with a doctor - The Patient Revolution: https://patientrevolution.org/visit-tools.

Do you normally take a list of questions along with you to doctor's appointments?