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NMO Journey

Jenny Gran

During summer of 2009 I visited my Neurologist as always for my routine Migraine check in. My Migraines were worse and I was throwing up all the time, besides my Rt leg was dragging sometimes. He was not alarmed by that. He just increased my migraine meds and said “don’t worry about the dragging because if it is MS the insurances are not good about that, just wait until it gets really bad. My throwing up continued, I thought it was change of life since I was almost 51. So I went to a GYN and she said, yes but you need to suffer thru it, don’t rely on hormone to help. Then I developed terrible Rectal pressure and pain! So was sent to a Rectal Dr. Exam was done, nothing remarkable found. Then I developed awful Bladder Burning, was sent to UroGyno and surg was done to blow up bladder. Bladder okay. Then My left arm started itching terrible, my nose started running like a faucet for a few weeks until one night (January 2010) I had neck pain and the day before my lt arm was numb. 

I went to Urgent Care, then to hospital for MRI, admitted to hospital, (under the care of a different Neurologist then the one I had been seeing.  She  is excellent and knew to test me for NMO (I still see her today along with Dr Weinshenker at the Mayo) The morning after I was admitted I was already paralys lt arm, legs, my Thyroid was completely shut down too. I never had problems with thyroid before but it came back.  C2-C6 Lesion I was in hospital 1 mth,  steroids, PT,OT,SpeechTherapy. ( Therapy so hard! I recall holding up a thick rubber stretch band with both arms and asking the Theapist how much it weighed, she said 1 lb, I was crying..)When I was discharged I continued OT, PT, and Speech Therapy for a period of 2 years (took some time off because of those awful Tonic Spasms.  But told myself this is nerve healing. I do have residual effects. Continual itching lt arm with numbness,itching lt chest, lost some hearing lt ear with continual tinnitis both ears, vertigo,spasms besides extermities,face,eyes,throat, legs sometimes don’t work well, lose feeling feet, movement. Use wheelwalker for going to store, where needed. although can walk. I did develop Osteoporosis, steroid induced most likely. I could no longer work or drive. I was a power walker before attack and always told myself “I don’t know what I would do if I could not walk”. When I got home from the hospital , I still using a wheelchair, I was sitting looking out the front window at the beautiful snow, I told myself ” what a blessing it is to be home and to see”!  (not even dwelling on not being able to walk)I count my blessings everyday. Everyday a new day. I take my meds, they take the edge off the spasms, nerve pain. and ICE is my friend! Imuran has kept me stable, we play with dosages once in a while, I do have three different anemias .  Unfortunately I fear NMO symptoms can be masked from my Chairi, Dibilitating Migraines(auras) or the severe Gastroparesis if it gets out of control.  I just tell myself everyday a new day, Everyone has challenges, and I count my blessings!

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