Neuropathy

[destiny05]

Hey you guys jus wanted to introduce myself and see if i can find any similar stories or people who are going thru something similar and can offer support i am on this app after coming out of my depression hole and i am ready to talk to somebody . I am 21 years old 2 years ago i got hit by a 16 wheeler and was diagnosed with a radial tear in my L1-L5 vertebrae and after doing all types of intensive therapy for a year and no help with the chronic pain we decided to try epidural steroid injections after no help we were aiming to do a procedure where they go in and burn the nerve thats causing pain (kinda like a root canal ) i wasnt given enough anesthesia so i wokeup crying screaming while the needle was in my back i was given more anesthesia and told to calm down they finished the procedure and i went home that same day having symptoms i never had before (burning , tinging sensation from my knees all the way up my sciatic nerve to my tail bone , extreme pain while sitting , limping and leg weakness in one of my legs ) fast forward two months after having multiple test run (mri,emg,full blood panel) i was told i do not have any immune diseases causing the disorder and i was diagnosed with peripheral nerve dysfunction and neuropathy of my leg fast forward to date i have neuropathy in both of my legs and full blow symptoms in both and also starting to have symptoms in my arms . I am currently being seen at John Hopkins medical center trying to get answers . I have been dancing /cheerleading all my life and it has been really hard accepting the fact i cant use my legs how i used to . i am 21 and have to use a cane to walk through the mall i cant go on normal dates , vacations walk around the city with my friends its very hard to accept but i am dealing with it the best that i can . Thanks for hearing me out you guys ❤️

[wobblybee Administrator Pioneer]

🙂 I can empathise with you re Neuropathic pain, it is horrendous and can really hamper daily life, apart from the other challenges you’re coping with. Google ‘Neuropathy support groups’ and you’ll find links, people coping with your specific pain and difficulties may be able to give more constructive advice and support. As yet, I haven’t found an answer for my own condition, although I have read about people trying TENS machines as a form of therapy to give some relief (google TENS machines for best explanation). Best wishes 🙂 xB

[wobblybee Administrator Pioneer]

🙂 You could log onto uspainfoundation.org At the top of the home page there’s a link to support groups in various States 🙂 xB

[destiny05 in reply to wobblybee]

Thanks so much

[BadHare Ambassador]

Do you have access to pain management courses where you live?

I find magnesium & B12 are helpful with neurological pain, as well as gentle yoga stretching.

[destiny05 in reply to BadHare]

I see a pain management dr once a month but he basically jus gives me medicine and says he wanna wait till im seen at john hopkins

[catwomanno1]

Hi destiny05 i suffer from Visceral neuropathy which my consultant describes as MS of the gut. I get spasms that used to run throughout the get that were so severe that I wasn’t able to get food into my gut so for 4 years I lived on liquid drinks that provided nutrition into me. I seriously struggled to even go to the toilet which caused further problems. The pain used to be so unbearable that I spent 8 months in bed. I was able to have major surgery which helped tremendously although didn’t solve the problem. Nothing can. So I empathise with you. I also have a lower back problem which causes sciatica and facet nerve problems down my leg. I have had various treatments to try to help with this problem I had facet nerve injections for a few years which initially helped with the facet nerve pain eventually it stopped working. Then I had treatment to try to burn the facet nerves. This was incredibly painful as I couldn’t have anything to anesthetise the nerves as the surgeon had to see how the nerves responded. Initially this helped with the facet nerve pain but it lasted for three months not the 12-18 months expected. The surgeon explained that he had never performed the procedure under 12 months so he didn’t know if it would work. He agreed to give it a go as I had the best results that I had for any treatment. The 2Nd procedure went seriously wrong and had to be abandoned. The problem occurred because I had had so much of the facet nerve injections that the gap where the injections entered my body created a much larger gap. This gap was so near the sciatica nerve that if they continued I would of likely ended up paralysed. Even though I was having these treatments I still required opiate drugs and high levels of gaberpentin. Unfortunately there’s not a lot of treatments for nerve pain except the ones that I’ve mentioned except for injections of Ketamine. I refused these as on two occasions I had bad reactions to Ketamine. These were higher doses than I would have received if I had the regular injections but I was really put off Ketamine. This was unfortunate as Ketamine was effective as a drug for nerve pain even sciatic pain ! I don’t know if any of this information will be of help to you. I wondered if the nerve burning treatment was the same as the one I had? Although I wasn’t given and anesthetiser. Just because these stopped working or didn’t work for me they maybe more successful for you. Best of luck and hope that you find something successful. If you do let me know as treatments will be different in different countries. X

[destiny05 in reply to catwomanno1]

Thank you soo much i am also on gabapentin i will be asking about the ketamine shots but yes it sounds like the Type of procedure i had and were trying to get (nerveburning ) i hope everything gets better for you we all holding on as best we can ❤️

[catwomanno1 in reply to destiny05]

Hope the Ketamine injections work for you. We just have to continue to have hope and faith. Don’t give up. Take care @destiny05 x

[kikidoyouloveme]

Hey. You rock the shit out of that pimp cane. It just makes you that much cooler.. also it’s charming to men when you make them do stuff for you smack them around with your cane they’ll and you will think it hilarious . What im trying to say is find the humor in it and roll with it . Turn it into comedy for yourself and everyone around you

[destiny05 in reply to kikidoyouloveme]

Lol I appreciate this soo much i will be there one day tired of trying to look cute limping anyway 😂❤️