Member Neuropathy Journey Stories: What's Yours?

Could it be autoimmune reaction from the metal in the first shoulder surgery ?

Good evening @gbny1224 …….Hello, I haven’t met you yet. Thanks for your post and that is a viable question about the possibility of an autoimmune reaction. Before I tell you about the testing, I will reveal that I am 80 years old and have had 14 orthopedic surgeries. Ankle, toes, knees, shoulders and thumbs. Oh and three spine surgeries over the years. The metals that were introduced years ago are still being supportive….no allergic reactions. I used to be a pretty active person…..but stumbled a lot down mountains and stairs, off of horses and rafts.

The skin biopsy was at .09% Not very healthy nerves. So, I have learned a lot and suffered way too long. Connect has been my source for education about my condition and allows me to fight any lingering depression by volunteering to help others.

I do know that what works for one, doesn’t necessarily work for another. What are you dealing with these days?

May you be free of suffering and the causes of suffering.
Chris

Thanks I have a long list of strange seemingly unrelated issues. They all occurred within a few months. It's more like my body is producing junk protein and depositing willy nilly. I could start at the bottom none are too severe the worst is the hip pain that started 1 year before everything else and 6 months after surgery. I know you can say that everyone is different but I have too many oddities atypical SFN. Feet burn hair loss puffy feet(subsided) hyperpigmantation weak painful legs hip pain ruq pain cant eat large meals lost 12 lbs in one month eating normal resting heart rate 120 (subsided) cyst on wrist shoulder and lump on white of the eye pain in joint of 2 fingers pain in shoulder mri ok headache 3am in the center of head for 3weeks brain fog still off and on cat scan of head and abdomen ok. Woke up one morning and had a large bag under rt eye later both. Only blood work bad was rh factor 146 and highly reactive to Ni 22.7 on ltt. You can Google various phrases like autoimmunity and metal implants asia. Also u can go to melisa website and look thru the various links testimonials etc. How about the celebrity test who has idiopathic sfn ? No one Who has strange issues after implantation Dick van dyke had headaches for 7 years until his dental implants removed. A lot of these issues show up months to years later so it's hard to establish a connection. Also one of the 2 environment links in autoimmunity is smoking ( the other vitD) which contains an amount of metal that gets absorbed directly into the blood stream. Skin reaction allergy involves completely different cells. Some patch test pos to a metal and have no problems with implants. Take care 🙂

I want to let you know that I had to stop the magnesium because my legs were bad again and I didn’t know if the magnesium caused it. I was taking it once a day. I’m off a week now and trying it once a week.

Regarding marijuana, I don't want to get high or smoke/inhale anything in my lungs. Marijuana is legal in my state. I have disabling feet pain during the day with each step I take! I tried applying CBD balm (made from both CBD and THC) to my feet & toes but did NOT get any pain relief. I don't like the messiness of the balm but if a balm will reduce pain, I'll use it.

What type and form of marijuana should I try?
Thank you

My neuropathy started 50 plus years ago, but really went south ten years ago. My story is about the progression from using a cane to being wheelchair bound. Canes did not work real well given the leg would just go 'out' as one or more nerve impulses failed in their journey from the brain to the muscle. I was using a roller walker (Amazon) for five years, or a shopping cart in the big box stores. I was still going straight down at times. Once it got to stage 4 and falling 1 to 3 times per day, my neurologist wanted me in a wheelchair. In my research, I found that a wheelchair caused a significant decrease in longevity. I definitely wanted to stay out of the chair for as long as possible. The Mayo Clinic states that leg braces are an option. I bought an off-the-shelf KAFO (Knee, Ankle, Foot Orthotic) from Amazon as a trial. I had no falls over a two week period. That was enough to convince my neurologist to issue me a prescription for a pair of custom leg braces. The OTS brace slipped down enough that the axis did not match up to my knee axis, causing pain. Medicare covers the cost of the braces, to include the C Brace which includes electronics to help with gait and helps stiffen the brace at the start of a fall. I bought a set of walking sticks to go with the braces and am learning to walk with them. I'll report back in a month when I have some real experience with the braces.

ericd47 - Can sort of relate to your story but not to same degree. My walking became an issue with sensory motor PN and my doc prescribed orthotics and I have the walk-on-flex. Without them on, very unstable and need cane but with them on, no cane needed. After falling on my face a few times caused by drop foot, something had to be done. Without them, I literally walked like a one-year-old with raised knees and I became a furniture toucher. Orthotics give me about an 80% improvement in walking. Costly but better than tripping.

OK, marijuana is legal in my state as well. Here is a part of my story...I hope a part of this will help. My feet were very painful for 25 years. I tried every shoe, support, cream there was! I had two failed surgeries, until I was FINALLY diagnosed with PN in 2016 when it took me down. I had to walk with a walker or chair to wall...you might know the routine. Then my HAND doctor ( I told him about my foot problems, because he is a good listener) sent me to Dr 'Magic" for the CBD. Truth be told, I tried many many strengths and types ( not smoking though) of CBD until I got the right one without feeling a bit high. One days I took a second capsule in the afternoon, and that did kick in a little unwanted high. It HAS to be the right balance for YOU! BTW, over the counter does NOTHING for me. I cannot STAND to feel HIGH. I want pain relief. Now, this strength, one in the AM, cut the pain a little more than half. I use a CBD rub in the morning and at night, but it is amazing how huge the difference is in pain relief. But, here again, we are all different, and it does take trial and error for most of us. Best of luck!

Two-and-a-half years ago my entire left side went numb over the course of a few minutes and lasted about 36 hours, starting in my scalp and then quickly travelling down my body to my toes. This was near the start of the COVID lockdown but nothing to do with COVID. I guess this was a possible sign of MS as my Mayo (AZ) PCP sent me to a non-Mayo MS specific neurologist. Numbness quickly turned to pain (pins & needles, sharp pain, electric shocks) with it jumping around my left side without rhyme or reason. No signs of lesions and no muscle weakness led to the untested conclusion that it is NLD-SNF. A random finding was taking a Medrol dose pack (steroids) for something else and getting 100% pain relief for 11 days which would then point to it autoimmune / inflammatory in nature. The MS doc dropped me (no hard feelings as not MS) but then trying to get my PCP to find a Mayo neuro only gave me an option to go to the pain clinic - not something I wanted.

At this point I get flair ups or whatever the proper term is called in every area on the left side except my tongue/throat (occipital, trigeminal, shoulder, upper arm, lower arm, hand, fingers, chest, abdomen, groin, anus, thigh, knee, lower leg, ankle, foot, toes). I have been controlling it somewhat with anti-inflammatory supplements for the last two years but that is starting to be less successful. I won't take gabapentin / Lyrica / Cymbalta, etc. and steroids at the Medrol dose pack level have increasingly less effective - I only take them when really bad and the last time relief lasted about 2 days. I know long-term steroids are bad too and feel like I am at my wits end with managing this. I have multiple other issues that make it that much harder to deal with.

Hello Aaron @aaroncush, Welcome to Connect. Wished there was a simple answer that would help. Doing your own research and being your own advocate is the one thing that each of us can control. You are not alone in your journey. I'm pretty sure we all started out thinking there was a magic pill that would make it all better. I posted my story and what helps me earlier in this discussion here - https://connect.mayoclinic.org/comment/310341/.

The Foundation for Peripheral Neuropathy has a great list of treatments that you might want to read through to see if they might be helpful including complementary and alternative treatments and a list of supplements that promote nerve health here -- https://www.foundationforpn.org/treatments/.

You mentioned the symptoms came on all of a sudden. Do you have any other medical conditions that could be related like diabetes?