#demyelinatingdisease

This is Megan. She's 16 and lives with neuromyelitis optica the same rare condition niamh our admin has. Go check out her newest video o er on PerfectlyKnitBeauty or click the link in her bio! @megan.woolf . . . #opticneuritis #demyelinatingdisease #transversemyelitis #neuromyelitisoptica #nmofamily #nmofighter #nmowarrior. #chronicillness #spoonielife

Hi everyone. I would love it if you'd click the link in my bio and read my story. It'll help you get to know me better. Do any of you have a blog? If so leave the link below! . . . #niamhsnmo #neuromyelitisoptica #transversemyelitis #opticneuritis #demyelinatingdisease #chronicillness #chronicpain #chronicfatigue #choanalatresia #nasalmalformation #warrior #nmofighter #spoonielife

#spooniespotlight My name is Hannah and I'm and 27 year old wife, mother and C.I.D.P fighter! Chronic inflammatory demyelinating polyneuropathy is an auto immune disease that causes my immune system to attack the myelin sheath (covering) of my nerves. This causes numbness, pain, loss of reflexes, weakness and other symptoms. My symptoms started in October 2013 and I was diagnosed on the 18th of June 2014. I was diagnosed 2 weeks after finding out I was pregant with my second child. My husband and I had been trying for a baby for 3 years and suffered several losses but I was told the illness was not hereditary and shouldnt affect the pregnancy. The pregnancy was hard but nearer to the end my health improved. Three months after giving birth to our second daughter, my health went down hill again. I couldn't do the things I used to do, dry my hair, cook family dinners, cut my own food, shower or bath with out help, dress my self etc and I needed a wheelchair to leave the house. I'd gone from a working mum who regularly went to the gym, went on walks and was forever chasing around my oldest daughter to a CIDP fighting mum who couldnt even cut her own food. At my next neurologist appointment I was put on 30mg of Steroids. The 30 mg helped a lot and I was able to do nearly all the things I couldnt before. I could walk much better and didnt need the wheelchair to go out anymore. I used a stick to walk with instead. After a few appointments with the neurologist we decided to bring my dosage down. I've been slowly coming down the past few months and was due to see my neurologist this July. Unfortunatley there was a massive cock up at the hospital and I wasnt booked in for another appointment. My health has declined rapidly in the past few months and I am beginning to struggle again with all the things I struggled with before. I am currently waiting to see my neurologist in December and hopefully recive a different treatment as I'd like to be off the prednisolone due to side effects. . . #chronicillness #chronicpain #spoonielife #chronicinflammatorydemyelinatingpolyneuropathy #polyneuropathy #demyelinatingdisease #demyelinatingpolyneuropathy