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Posts (5)

Aug 11, 2018 · Has anybody had an implantable neurostimulator for chronic pain? in Spine Health

Hi My name is Jenny and I have a ware disease NMO very painful since I can’t take pain Meds I had the neurostimulater implanted on the nerves by my spine It wasn’t easy going thru the pain of getting it put in your awake and talking to them about if that’s a good nerve and even the anthetesic didn’t help me. But I had it for 6 mths but it never helped much it started hurting me more then helping but I’m super sensitive to anything cause of this disease destroys the myelin covering on my nerves . But it might work for you it might be worth a try cause I have a friend that also has a nerve disease and she’s doing great with hers she’s going back to work at school with teaching Lil guys. I will say a prayer for you God Bless You

Jun 12, 2018 · Looking for info about Devic's Disease / Neuromyelitis Optica (NMO) in Brain & Nervous System

This won’t never let me send a message to anyone with this demanding disease like myself so tell me why Thanku Jenny

May 25, 2018 · Looking for info about Devic's Disease / Neuromyelitis Optica (NMO) in Brain & Nervous System

I’m so sorry your husband has this disease also it’s so hard to deal with I went to a Guithy Jackson convention in 2013 there was 200 of is there and Drs from diff places to answer our questions most of the people that has NMO are on pain Meds as Lyrica etc and steroids and that’s the Drs answers mostly is take Meds but that leaves me out I do take an infusion of Ritxuimab to kill the bad B cells so I won’t have a relaps. Does your husband do anything to keep him from relapsing? The conventions are every year the first time you go they pay for your room and Victoria Jackson always has great gluten free food for us . Her daughter came down with this disease when she was 14 and now she’s 19 I believe and on Meds but looks great. Victoria went to the Drs and said let’s find a cure so she very determined wonderful lady I met her she’s so very sweet . You can look up Guithy Jackson foundation and it has a fb also sorry I’m so windy just trying to share cause her and her husband has donated millions of dollars . I’m hoping we will all stand in prayer for a cure so we can have a life again . Take care and you can talk to me anytime .

May 24, 2018 · Looking for info about Devic's Disease / Neuromyelitis Optica (NMO) in Brain & Nervous System

Hi I read the story about her husband woke up paralyzed in his legs and no use of his bladder and bowels the same happened to me in2010 First it was one leg then the other but the Hosp where I worked at had no idea what to do for me it was sure scary . I was sent by ambulance finally on the second day after me and my husband made it work that way to Stanford Hosp in Ca and right away in the ER I was diagnosed with NMO by then myI was paralyzed up Thru all of my ribs and couldn’t move only my right arm a lil and my head . I was in the hosp they treats me with plasma freazes 5 x I had 3 wks of rehab but I can’t take pain Meds are steroids my body is in chronic pain but the Meds makes me worse. I’ve tried so many Meds and infusions and a stimulater but nothing works and it’s been 8 yrs I’m still in a wheel chair I can take a few steps and stand but I’m bent over my spine is curved it never was before I’m still miserable but I keep pushing and do things until my pain gets to bad then I lay down and nap I now have a swelledfoot red and burning I have to ice pack it day and night there’s no Drs that know what to do I put myself on a no sugar no salt no white flour lots of veggies and meats only use stevia etc to help the inflammation that causes pain so far it hasn’t helped after 5 yrs but sick for 8 I still pray and keep my faith . I’m praying for a cure to help all of us

Feb 24, 2012 · I have a rare disease called nmo(devics disease)its hard to stand the in Just Want to Talk

I have a rare disease called nmo(devics disease)its hard to stand the pain Im paralized in my ribs I would like to meet someone with tghis disease