Living with Neuropathy - Welcome to the group

I was diagnosed with anti-MAG Peripheral Neuropathy. I’ve had 2 treatments of Rituximab which my Rheumatologist thinks might even help my RA. I’m currently doing another treatment as they can do it every 6 months. I don’t feel any improvement but I’m hoping this treatment is helping my condition from getting worse.

@catro hi charlie - i am 89 and dealing with pn much the same way - i have had neuropathy in the feet for years but it was mainly a tingle and a bit of rigidness in the toes at night and i didnt pay attention and hiked, walked, etc for years. It got much worse this year and has progressed to my calves and often to my arms in just a few months. There are not enough neurologists in Denver - it is a 6 month wait to see one and then they often are not taking new patients plus since there is no cure they arent interested. I am amazed I have reached this age in as good a shape as I am = slower and often very tired with little energy which is the worst but i keep going. I have no car so must continue to walk even if just to the bus. I will be moving in a month to senior housing which has an indoor heated pool open all year so I am hoping daily water aerobics will help keep me going. I read this site for information - someone mentioned rubbing the feet with VIcks and it does help at night. Other than that, it is just onward and upward. Dorothy

@tammy65, it is simply a living hell. There is NOTHING that helps me. I have found its impact to be progressively worse after completing Folfirinox. The afternoons and evenings are infinitely worse, if that is even possible. My neuropathy is a basket of everything in my hands and feet. I find myself dropping things, losing my balance, and falling on occasion. The tips of my fingers are numb, while burning at the same time. Also, when touching anything, I feel electric shocks. The numbness from the knees down reaches a peak in the toes. I also think my left foot is beginning to drop. There is a feeling of swelling and sand at the bottom of the feet, particularly in the front. Driving is becoming problematic given the almost non-existent sensation, I am not sure how it all ends. Stan

Hi Dorothy, just getting to our advanced old age demonstrates resilience and fortitude. Thank you for your reply. I hope you like being in assisted living. My wife (86) and I are still in the same house we have had for 30+ years and hope to be able to stay here for a long time. I still drive which is essential because we aren’t in walking distance of any shopping.

@catro i am not going into assisted living = at 89 I am much too young for that so my new place will just be for seniors 55 and above - 55 is now a senior i guess - I was just starting a new career at that age. Anyway, no meals served or nurses to rub your feet - i will still be filling my own ice cube tray. I walked three miles today with the ladies walking group - i was way behind but there were two other slow ladies with me so i didnt feel that bad. Of course by the time I got home the calves in my legs felt like they were encased in cement but at least I did the walk!!!!!!

Hi, I am Jerry and was recently diagnosed with bilateral neuropathy of both legs and of axonal nature meaning it is irreversible. I now need to learn to drive a new vehicle with hands only as my feet cannot sustain feeling the gas and break pedals without falling off. I have many questions I'd love to ask such as what vehicle others have found satisfactory for themselves and other related issues. How do I start?

Hi, I am Jerry and was recently diagnosed with bilateral neuropathy of both legs and of axonal nature meaning it is irreversible. I now need to learn to drive a new vehicle with hands only as my feet cannot sustain feeling the gas and break pedals without falling off. I have many questions I'd love to ask such as what vehicle others have found satisfactory for themselves and other related issues. How do I start?

@jerademan @jerademan Me too. Thank you for asking! 🙏