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One response to “My NMOSD Story”

1. 

   November 10, 2019

   Donna

   My husband was diagnosed with NMO about 2 mos. ago after an exhausting , frustrating journey for answers. to begin with is a lung transplant of two and a half years, he did fabulously after transplant, out of the hospital in 9:days, never looked back, working in his own practice as a CPA, exercising daily, traveling things were good. In April of 2019, he began loosing vision in his right eye, was sent by local Doctor, as he had had a similar episode 12 years prior we had the name of a neuro ophthalmologist and after 3 and a half weeks of begging finally got him in to see him mid May. He started him on a week of high dose steroids, ordered an MRI and blood work, within 2 weeks he started to loose vision in the left eye, the MRI showed inflammation of the right optic nerve and the blood tests were negative for any antibodies, at this point he gave us one of 3 diagnoses, 1. Optic neuritis, 2.Tachrolimus induced blindness (one of his transplant meds which we quickly took him off) of NION a circulatory issue. By the end of May he was almost blind in the right eye and left eye was becoming more involved, so he ordered 5 plasmapherisis treatments. During the treatments I noticed he was a little bradycardia, and started to suffer from severe lethargy I also noticed he seem to me having trouble walking dragging his,left,leg, on a follow up,visit I mentioned this to the neuro ophthalmologist and he suggested an appoint with a neurologist. Before we could get to see a neurologist, he became more and more lethargic, Was brought to a local,hospital, found to have a heart rate in the 40’s and was transferred to hismtrnsplant hospital, during the time in the local, hospital,he was seen by a neurologist, he felt his gait issues were do to his his blindness, but did recommend we see an autoimmune neurologist at the hospital,where we were being transferred to and where he received his lung transplant. He received his pacer, but when I asked the transplant doctor for a consultation to see autoimmune neurologist he said “ you can do that out patient” . We were hoping once home the pacer would help improve his lethargy, Imcalled his transplant doctor as I couldn’t get an appointment with the autoimmune neurologist for several mos, his team called back and got me an appointment with another neurologist fairly quickly but it wasn’t with the doctor yet, but they assured me he was also,autoimmune. so onJuly 19th we saw the neuro ophthalmologist after hearing about the pacer, he felt surely my husbands loss of vision was do to “ circulatory issues, by this time he was almost blind. That after noon we saw the autoimmune neurologist,associated with our transplant hospital, after exam he felt my husbands ambulation issues, which were getting worse, were due to “,peripheral neuropathy, compounded by his vision loss! I remember asking him specifically he felt he could have NMO as he was also starting to have bowel issues and some myotonic twitching, he said absolutely not!!!! We returned home, but Andy continued to have increasing lethargy and was almost completely bling. End of July he was feeling worse by the day so called his transplant doctor, he ordered some out patient lab wrk said he see him that week, before that happened my husband had a syncopal event in the shower sustained a lip laceration and was rushed to the local emergency room, he had negative CT of head, and lab work looked normal, but was found to have significant orthostatic hypotension, he was transferred to our transplant center. He was seen by transplant team who ordered multiple labs tests, seen by neuro who did nothing!!! They decided another MRI was not indicated and were hesitant to do it as his pacer was fairly new( even thought he has a MRI safe one and cardiology said it could be done) Some one recommended a spinal tap, but the head neurologist said it wasn’t indicated, he was still sticking to his story of peripheral neuropathy, even though my husband was working with PT here using a walker now, loosing more and more strength in his left leg more numbness and leg of sensation in right. He also had more bowel issues during that admission, more pain and more myoclonic twitching. He was started on midodrine for blood pressure but could not tolerate the drug, he would have such urinary urgency,frequency and his BP would go as high as 180/100, he could not tolerate. On day eight we were discharged, the transplant team had not answers, readily admitted that, recommended that I take him to NIH in Bethesda Maryland to the “ Center for Undiagnosed Diseases, neuro on discharge, after nothing was done by them, were sticking to their story of “ peripheral neuropathy “ I even asked isn’t it more “ autonomic “ blindness, bradycardia, orthostatic hypotension, bladder and bowel involvement, myotonic twitching?. They said no!, I took my husband home, I was provided some hom health an aide 3 times a week, Ann aide and PT an OT person as he was becoming more and more care. The PT/ OT people basically said this is a lot more than peripheral neuropathy, I also contacted the NJ Commission of the Blind to begin addressing his total loss of vision. I did upon returning home contact NI H to try and find out how I could get him evaluated there, after a phone interview they told me it could be a 3-4 mos process, but were honest with me and felt he hasn’t had a complete enough neuro workup at that point. I decided I was not returning to our transplant center and that neuro team. I called the neuro ophthalmologist and asked for his help as he was connected with a neuro hospital and when I tried to get an appointment on my own there was a several month wait. He managed to get us in to see a well known neurologist at the end of August, by this time my husband is rapidly declining, lethargic, sleeping all the time, no appetite, loosing more weight , totally blind. When we saw this new Nero team, they readily agreed that there was “ something going on” promised they would get to bottom of it. They ordered multiple outpatient tests, I asked if they could please admit him as it was getting harder and harder to get him oit as he was totally wheelchair bound, had bouts of syncope, they said no would have to be done outpatient, well we got the blood work outpatient, but the next day at home he had another syncopal event and had a complete mental status change, not knowing me or anything, it was devastating, agin we were brought to local hospital, they tried to transfer him to the neuro hospital where we had seen the neurologists but they had no beds, uncomfortable with keeping at that hospital, due to his condition, they transferred him to another hospital ( higher level of care) initially I was upset, thinking here we go again , no answers, but I was pleasantly surprise by the Mose excellent neuro team there, they conferred with the neurologists we had met with and came up with a plan. First he had a very positive lumbar puncture, he them had an MRI of the brain which showed multiple area of inflammation and 3 segments in the cervical spine, diagnosis MRI, diagnosis NMO!It took some consultation with transplant team, infectious disease to come up with treatment plan, he did 5 days of 1000mg a day of steroids to try and quell the inflammation and then Retuximab, he was discharged 2 days after Retuximab to acute rehab. Initially he did ok at rehab we struggled with BP issues, but added salt tablets and a binder and he was able to stand and use a walker for very short distances, the second week of rehab he had to leave for the day and get second dose of Retuximab, after the second dose he seemed to decline again, more and more lethargy; no appetite, weight loss and returning issues with memory and some slight confusion, he was unable to stand in therapy. We had been there a mos and over 2 weeks at the hospital, so he hadn’t been home in 6 weeks, decided he wanted to go home to rest and get stronger, so we did that. Upon returning home we were suppose to be seen by an autoimmune neurologist but didn’t have an appointment till December 12th! Upon returning home he initially did better, appetite improved, no more confusion , but was requiring more and more care, the visiting nurses suggested I switch him to hospice, would give me more support; and I hired some private help for 4-6 hrs a week. Hospice explained that he could have tests, doctors appointment going forward. By our 2nd week home he kept going downhill his appointment with the new autoimmune neurologist wasn’t till Dec12th; I called every other day for a cancellation. He had lost additional weight, was more and more incontinent, had to give him suppositories just to poop was having syncopal events just pivoting from wheelchair to bed and and back to bed ended up on the floor 3 times and had to call the fire dept for assistance. Finally the autoimmune neurologist had a cancellation and we saw him on Friday, he immediately admitted him to the hospital for emergent plasmapheris, my husband ( after being through so much) asked him honestly will it help, would you do it or would you recommend your family do it; he said yes it’s worth a shot, it may be the bridge you need to get you over the “ hump” So we were admitted plan is repeat MRI tomorrow to see if any new lesions if that’s the case high dose steroids for 5 days, start plasmapherisis tomorrow. We still don’t have a prognosis, only that him some patients it helps, we understand he will probably not get his sight back, but have any of you gotten improvement in BP, bladder; bowel control , ability to walk; doctors say will be mos and mos of rehab, he is so so sick just wondering if any of you out there came back from this, looking for some hope

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