Gary’s 30 year Journey

When Gary and I got married in 1983, we did not know that a disease was looming in his body. On Feb 2, 1984, Gary was kicked in the head by a cow, as he worked as a cowboy on a farm. Scary, but nothing came out of the kick except a slight concussion and a chronic stiff neck… we thought. Within his spine at his neck, NMO started causing problems. Gary could not shake the stiff neck that by April had started causing tingling in his hands.

By May, his entire body was either tingling or numb and his walking became erratic. He began to stumble more. The first thing we thought was that he had a pinched nerve in the neck from the kick. His conditioned worsened until we had to seek neurological intervention. We first went to neurosurgeons that in time ruled out ruptured discs and pinched nerves. All of this was before the MRI, so tests were not quite as accurate and thorough.

Gary’s walking continued to deteoriate until he was placed in the hospital for the second time in August. Within a week, his bowels and kidneys were trying to shut down. Exploratory surgery was scheduled and a biopsy was taken of his spine. After days waiting and the precautionary IV steroids, Gary was diagnosed with nothing but his walking and such was improving. Gary spent 1 month in the hospital for therapy. After a 2 week stay at home, we went ot the doctor for a check up. He stated that Gary had MS with no test results to back it up.

We played “”find a new doctor””. We settled with a neurologist that would say it is MS and then the next visit it wasn’t MS. No test would confirm or discount MS, even though by this time the MRI were available. Gary stopped seeing this neurologist and went into a 8 year remission. He was almost normal, except for the 1 blind eye, that he had before I knew him and we thought it to be related to a welding accident. In November 1991, Gary hurt his back and woke up all the neurological problems.

After 1 month of increasing nerve issues, Gary started urinating on himself one morning. I called the old neurologist that had cleaned out his records and would be glad to see him in about a month. I knew we didn’t have a month so I took Gary to the ER in Memphis. I knew that the right doctors would be put in place. Gary’s bladder had quit working, the urine was over spilling his bladder, as it had not place to go but out. Numerous MRIs showed nothing. Finally in the mid chest area, spinal swelling was indicated. IV steroids were given and Gary got better. A large staff of doctors finally diagnosed him with MS. There was nothing else it could be.

In a year’s time, Gary lost vision in his only good eye, which prompted us to go the ER again and meet up with his new neurologist that didn’t believe he had MS. After this episode the neurologist stated that Gary had to have MS. There was nothing else it could be. After 10 years of no specific diagnosis, the doctors determined it had to be MS.

Gary had many attacks within the next 15 years. He took Betaseron for his MS and then changed to Copaxon. His neurologist had gone into research, so we had yet another new neurologist. The files were just handed to her and because of finances, Gary and I declined yearly MRIs.

When Tysabri made its debut in the MS world, Gary opted to try it. By now, he was permanently on a cane and had to have aditional assistance to walk. He could see but was considered legally blind from a few optic neuritis attacks of his good eye. The bad eye was still blind, completely. The baseline MRI required with Tysabri users showed no lesions on Gary’s brain.

The neurologist stated that she didn’t think he had MS, she thought he had neuromyelitis optica and there was a blood test for it. We said ‘oh no, here we go again’ and nothing was going to stop him from getting his Tysabri.

I came home from the doctor and researched NMO. What I found was almost exactly what Gary had been experiencing for all these years. We opted for the blood test and waited for 2 weeks. And I do mean we anxiously waited, but in our hearts we knew that he had NMO.

In 2 weeks the tests confirmed our suspisions. After 25 years, Gary was finally and correctly diagnosed. This is a VERY condensed version of Gary’s story, but you can get the idea that it has been some kind of journey for both me, his wife and him. Gary is now confined to a wheelchair. He can walk a little, but not very far. Within this past year, NMO took his remaining vision. But Gary still fights to do. He does whatever he can and I try to find any way possible for him to adapt.

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