The story of Jenny
Hi, T hope you can understand what my journey has been over the past 7 years of being disabled from my Diseases. I am now 58. I have Three Rare Diseases Neuromyelitis Optica, an Autoimmune Disease that effects the Spinal Cord, Eyes, and Brain. Attack could result in Paralysis or even death.. A Chiari, back of Brain that protrudes into Spinal Canal and Gastroparesis, GI track moves slowly so should eat limited Fats and Fiber. I also deal with frequent Debilitating Migraines, Steroid Induced Osteoporosis, Interstital Cystitis, Partial hearing loss left ear with continual Tinnitis and daily bouts of motion sickness, balance prob, light headedness with feeling of faint seeing grey. I also deal with palpitations, high blood pressure med. I can’t plan on going anywhere for long or at all because of how I feel with my diseases. I can’t be on computer long cuz of the car sick feeling.
My life completely changed At age 51. Had attack and diagnosed with Neuromyelitis Optica. I am still unable to work or drive. At times my mind tell me to move my body and it wont. A few months before the NMO Attack I was not well at all. I thought it was my Migraines getting worse. I would Vomit so much, and leg would drag at times. Then my Left Arm would itch. The night my neck started to hurt so bad I could not sleep I went to the Hospital for a MRI, showing Long C-Spine Lesions. By the time they started treating me in hospital I was not walking and my Left arm numb, no feeling and not working. My Thyroid also had stopped. All of this due to the lesions. I was in hospital for month and responded to the IVSM so my thyroid started working again. They did intense Physical Therapy, Occupational Therapy, and Speech Therapy, which would span over a 2 yr stretch. When I was discharged I went home with Wheelchair.( Now only use wheel walker for long walks and can walk if not too much. ) I live in a Rambler so it helped. My Son at the age of 24 was able to be home with me for a few years.. He helped me thru those awful Spasms which you stiffen up, seizure like with movement, luckily one of my now 31 doses of medications per day keeps the Spasms at a tolerable rating. The attack left me with Residual effects, L arm numbness. L ear partial hearing loss with continual tinnitus, spasms, pain, balance probs, awful fatigue, continual Bladder burning. I take nerve pain reduction pills to help with the damage to the Myelin that did not repair itself. (like a phone cord that has become fringed) I take anti spasm Med, I take the Immunosuppressant Therapy Meds, I take meds for my nausea, which is daily if don’t watch my food, thru a Gastroparesis diet. I have followed this diet for 6 yrs and it could of been the result of the Nerve damage from attack plus meds. I also have Steroid Induced Osteoporosis. I get me my Blood drawn once monthly due to being on immunosuppressant Therapy. The only option now for trying to fend off another NMO Attack. At times when I tell my body to move it wont cuz of the damage to the Spinal cord.When I get my debilitating Migraines I have to take the nausea meds besides the Abort meds. The Profylatic Migraine meds are like fitting a shoes, not working totally but helping some. I get motion sickness almost everyday, and I also get terrible weakness where I see grey and have to put head down to correct this feeling, which could be part of the Migraine. I go on Steroids if warranted for the NMO. My skin itching along the Nerve path is a continual itch, and the chronic nerve pain, nawing discomfort is also a daily thing. ICE is my best friend. I have a Chiari which changed sizes a few years back but since I have NMO the chances of not becoming a Quadriplegic with Surg are high. So I am not worrying about it. I was told some of the symptoms with Migraines and NMO can be because of the Chiari.I can not be on computer much due to the motion sickness. For me the worse thing about this disease is not being able to do much for my Son with Autism because I am not as Independent as I once was. I depend on others more, and there are not too many of them. I tell myself everyone has Challenges, I count my Blessings everyday with the HOPE that soon Research shows a cure.