Optimism

I have had anti-MAG for about 3 years. Both of my professions (drummer/percussionist and gardener/landscaper require concentration and coordination -- in other words, me being present mentally and physically all the time. I believe that one must do whatever they can to not give in to the obstacles that various forms of neuropathy present. Instead, you have to find inspiration in small achievements; then, keep stacking them day by day. Look for inspiration from the accomplishments of others who have overcome challenges in life. I have used a full prong attack on this with the mindset that I will eventually get back to where I was prior to experiencing the disease. For me, the single most important tool is physical therapy. I was fortunate to find a physical therapist in the Kaiser system that specializes in neuropathic-related balance issues. She is amazing because she genuinely cares and is supportive and inventive. Every 3 or 4 weeks, I see go to her with new ideas and she always has some kind of feedback or suggestions. I spend two hours a day, just on the workout/p.t. elements that are dedicated to my anti-MAG stuff. Don't give up; stay positive.

@stangreen have you tried Alpha lipoic acid? NB it has to be the R form.

I’m almost at my 10 year mark with my debilitating Idiopathic PN, and I think I’ve achieved optimism, or maybe it’s complacency. Like @ray666, I’m happy at maintaining and thankful I don’t feel like I’m regressing. But my new life I’ve been dealt requires a lot of hard work and discipline, both mentally and physically. (Physically means PT, but also knowing limitations and when to rest in order to make it through the long haul).

I look back at where this thing crippled me 10 years ago, but now can walk/waddle, drive. And do some things with my hands again, and I know I don’t want to go back to those bad 6 months of my life. I also spent about 2 years in the negative areas of frustration, doctor blaming, and general feeling of isolation and hopelessness as I tried to learn about the disease and (hoped to) find a cure. I was fortunate to find this group on my own and have been overwhelmed by the help in lifting me up and pointing me in the right direction. At 61 now, I’m staying optimistic I can stay this way another 10 years!

@dbeshears1
Hi Debbie ~
It's a lot like moving through the stages of grief but it's not a straight line. Sometimes it circles around and just as you thought it was behind you, there it is, part of your life again. So glad to see your post...you always have words of wisdom! If I remember correctly, in those early years you endured several moves. Do you feel those upheavals resulted in slowing your progress toward what you have achieved lately in terms of physical improvements? For myself, getting overtired/having overextended myself always results in escalated pain, difficulty in achieving/maintaining
balance, and awkwardness in just about everything. Returning to routine sets so many things right again. God's blessings to you! Have a great week! ~ Barb

@dbeshears1 I am now trying a peptide called ARA 290. Appartently might help with nerve regeneration

@bjk3
I think moving is hard work, period! Re-establishing healthcare with each move was challenging too. Everyone having their own treatment protocol than previous healthcare and switching meds, etc. and me having to re-adapt how all the changes affected my total body, especially the neuropathy which is basically an untreated condition (except for my Gabapentin). I’ve been fortunate to have good PCP’s with each move that helped manage the coordination of the few specialists who wanted to change things in their area of concern.

I secretly hoped that each move would hook me up with a new Neurologist with new ideas and new research and new hope. But I had no such luck as I had to move 4 times in 10 years. Each Neurologist pretty much read the last one’s notes and continued on the “OK, let’s keep everything as is and call me if it gets worse”. I always dreamed of hearing “Here’s something I’d like to do so you WON’T get worse (or might get better!)”….. But that’s what this group gives me, all kinds of ideas to try and tools to help maximize life. I’m kind of resigned to the lack of medical knowledge, but I still pray for it.

Meanwhile I am proud of what I’ve accomplished! I can still travel with husband, see the world, go to baseball games, and take advantage of our community pool and activities. I haven’t given up on doing whatever I can as safely as possible (often in the seated position). I sure hope you’re doing well. My older husband has had challenges so we try to support each other. I know you’ve been on a similar journey as my own. Keep our heads high! (Except when walking… got to look down to make sure our feet are working right)

@stangreen Thanks for the suggestion, I will certainly research, I look forward to hearing how it works for you!

@dbeshears1 hello and thank you for sharing, may I ask are you taking anything for the neuropathy? Supplements or big pharma? Thank you again
Eric

@stangreen

I am amazed with the people out there who have such strength and fortitude to keep going especially with the state of the medical community these days; long waits, uncaring , etc. I have SFN diagnosis with non liner spread. Rest of body "except the hands and feet like most. The paint in. the groin and around the waist is particularly bad. Went to CC last year but basically a bust as after diagnosis as they told me to just increase my gabapentin. Had the biopsy for SFN and EMG. My whole body feels like it is on fire and a nights sleep is allusive with bad dreams from gabapentin and tramadol its like I am in my own hell. I wish godspeed for all those suffering. Started back in 2023 after a Moderna vaccine when a rash covered my entire body for 5 months and treated with a lot of steroids followed by Dupixent 6 months.had Lyme back in 2023 but had the normal doxcyclene dose three weeks course and later cleared by the specialists. Wish I could have checked out back in the Covid years . So many doctors and nurses I have spoken to never had the vaccines and lo and behold they survived. Getting ready to leave my fortune to the Neuropathy Foundation; perhaps Ann Oaklander who has tried to solve the mysteries of SFN.