I just want to give you where I am, and, need to get treatment ASAP, I will not make it with this disease. NMOSD-TM, has caused so many changes with me, because of the delay in treatment and giving wrong medication, etc. NEURO MYELITIS OPTICA SPECTRUM DISORDER, is a rare disorder that attacks your healthy cells in your body, It attacks the Central Nervous System, your vision and Spinal cord. Unlike RRMS-RELASPINGNG REMITTING MULTIPLE SCLEROSIS, unfortunately and especially without treatment and Misdiagnosed with MS, you progressively get worse. For me, I began with my vision in my left eye called Optic Neuritis, inflammation of your Optic Nerve.
My last eye appt, it has now turned into Optic Atrophy, which my Optic nerve is damaged, and has caused pressure to my brain, and headaches, that just makes me at times ball up in a fetal position and cry, and just want to pull my hair out. As I stated because of years being Misdiagnosed and on the worst medication injections fOR MS, it has caused Pressure to the left side of my brain. This disease has now turned into Transverse Myelitis, affecting your spinal cord, and depending if and where you get lesions on your Spine, you could become paralyzed from the waist down.
Finally, I have Neuropathy, which for me with each attack, the Neuropathy spreads, so now I have Neuropathy in both feet from toes to my ankles, and both hands and the entire part of my right side of my back which has traveled down a little further past my hip on my right side because of a lesion on my spine. I am 99.9% sure April into May, I had this time a very serious attack, but didn't go to the hospital, because, when I was admitted in December of 2014, the high doses of Steroids they give me, 1000mg for 4-5 days after 10 years of Misdiagnosed, they no longer worked and so as you see in the picture, they tried a treatment of Plasmapheresis, scary scary, but also unfortunately didn't work. So I was discharged with the Physician saying, I am sorry nothing more we can do. So I went home and followed up with NP, who is very sweet kind and caring, but told my husband and I , they can increase the Chemo pill I have but she said we really need to think about Chemotherapy, and as fast as she said it, went straight out the window......
But late last year is when my back on the right side went numb, and when you say numb, or Neuropathy, it by no way means no felling AT ALL. How I can maybe describe it, is if your leg or arm, hands falls asleep, and you get that uncomfortable tingling feeling, like electric shocks, we add like pieces of glass mixed with that and at times on fire, and like you are wearing tube socks rolled down above your ankles, and when you mix that with heat, your body, feels like your deflating and for, me my hands and feet swell and are just on fire. So in January I met with my NP and my Neurologist discussed my case with a few other top Neurologist's and Oncologist and said I needed to start the Chemotherapy ASAP.
But as in all my posts, updates, pain, stressors of everyday life as I feel the great changes within, after it was confirmed, I was to get a port placement in my chest, because the medication was gonna be strong, and just met with the Oncologist, who was soooo very nice and explained, I would do one treatment 8 hour infusion's and then check my blood work for the next 6 months and then a second treatment again, and the idea is to slow this disease down. But now as you know, the FDA/MEDICARE say's because i don't have Cancer, and not enough information to support the disease, denied all the way up to the US Senate office. So this last attack like I said, it made no sense to go to the hospital, like for what. Well now my right is becoming blurred and now altogether becoming difficult to see and now pain throughout my head and on the left side of my neck, is now numb from my neck, to about my shoulder.
The one that I have had for about 5 years of being tested, I was diagnosed with, Central Vestibular Dysfunction. That is in combination with my vision, it effects any and all motion, to where in the car, I have to close y eyes or even something simple as watching basketball ball, just to see them run back and forth, I instantly get nauseated and the pain around my eye and head in unbearable at best. Each and every disability I have now, ppl say how good I look, but that is because, the battle with an autoimmune disease is attacking your insides. So this is why I am PLEADING for help, so I can get Donations, I have another greater Stress, is the owner of our Condo is selling ours, and they just got a buyer so we have until September 30th when our lease is up. So if I can get the money for one treatment, I will deal with everything else later I guess, just over over whelmed and desperately need this treatment, PLEASE HELP. I would do anything for anyone with out a thought, so I am asking from my heart to hell me Please please please. I don't want to leave my g.randchildren PLEASE help me. Thank You so much.