Good morning. Hang in there everyone maybe one day it’s been a journey for all of us and boy has it been from all the different test , spinal cord stimulators the meds the list go on . I was on the search for a cure know matter what 3 years Into this journey a failed surgery etc . My neurologist sent me to get a spinal tap I knew I had hereditary SFN from biopsy but I knew I had a lot more going on then SFN , after this procedure and weeks pass I finally get my results . Not only did I have SFN and I also PN which I kinda knew that and Spinal Arachnoiditis which is explained my the pain that never shuts off
the it’s like having pain cancer but there is no end to it you just endure it day in and day out . The up side even though I go through this daily is now I have a diagnosis I know there is no cure for any of it . But with this my Neurologist was able to take a more aggressive approach to my condition . I still have to take Gaba
4800 mg a day NI’s Trig for spasms and uncontrollable muscle jerks , and Hydrocodone at very high doses this helps some and least I can sit in my wheelchair at the dinner table now say a prayer and eat a meal with my family I can now take a 30 minute ride that’s not much to say but I’m living a little I’m ok with that under the circumstances. My routine daily is to contract the muscles even though I can’t walk and my use my hands our not steady I fight … I bought a stimulator like they use in a chiropractor office very similar it’s had a bunch of tape electors.I place these on each leg and each arm and back 30 minute intervals 2 times a day and stimulate and contract those muscles so I don’t loose them essence it’s like working out . I was a body builder for 20 years and competed and taught Jujitsu so In theory I knew I couldn’t be at this level ever again because I have no feeling in my legs nor do I feel hot or cold I still have to get those muscles to work or I would loose them so stimulation was a last ditch hope for me and if anyone is reading this it’s works start slow . Sorry for the long post I see a lot of folks on here with the same or similar conditions , I say to you be positive it’s hard but think positive never give up on you period you our the most important part. Seek the best you will have down falls it’s just the journey there is light at the end . Find something YOU enjoy seek it and just like Nike slogan just do it … even if it’s hurts you feel better afterwards trust me . Stay positive even through the pain and be best you can and do t be afraid to try new things if you fail at least you tried and in your mind and soul you’ll feel better because you tried .
Again I’m sorry for the long post God Bless each and every one of you and god touch these folks that our in time of need that our in pain lord and give them the courage , strength and passion to reach out and do the impossible lord thank you everyday for the blessing in Jesus name Amen 🙏🏻
Regards Chris J .