Gradual NMOSD

I have NMOSD neuromeyeltis optica spectrum disorder. I gues you can say my NMOSD/TM is idiopathic they never found a reason why I have or got this, just came on. I am not Igg positive but my lesion goes from my T-6 to T-11 so it cannot be MS as I was originally diagnosed. I was originally diagnosed in 1999 with MS and then in 2006 with NMO when more information came out about that disease. I have a Baclophen and Morphine pump in my left abdomen that by means of a catheter delivers the medication to the intrathecal space in my spine. I have had the pump since 2003. I also take Azatheophrine or Imuran for the NMO. It is an immunosuppression medication, it reduces your white blood cell count to prevent relapses. Your body goes berserk and thinks your myelin is a foreign substance and the white blood cells begin to attack the myelin causing scarring and subsequently damage to your nerves and as in my case my spinal cord. The Baclophen is for spams. I also on bad days take Hydrocodone as a back up to the Morphine because the Morphine is delivered in one continuous dose throughout the day. I self catheterize about 4 times a day and at least once during the night. And use digi-stim (digital stimulation)to have bowl movements. I lost the ability to walk in 2010 and have been using a power wheel chair ever since. History It started sometime before 1999, I had a curious numb spot on the bottom of my left foot just below my toes. It felt like when you have a sock that doubles up putting pressure on the foot. I had that for about a two or three years. Then the numbness went into my left calf. I started tripping but didn’t think anything about it, didn’t know it was a condition called “foot drop”. It’s where you loose the ability to lift your toes and foot when you take a step forward. Then the numbness went into my left thigh. More tripping. Then I started to have lower back pain and though I didn’t realize then I was having numbness in my lower back. I was working construction in a warehouse (we pored concrete into forms that were changed days making different things out of concrete, walls etc.) I would ice my back during lunch but I couldn’t feel the ice coolness, I thought it was curious but didn’t think that my back was numb. I also was going to a chiropractor for the back pain but of course was getting no relief, another curious goings on. Then I felt numbness in my face, now I was getting concerned. Then after another time tripping I finally decided to go to the doctor. I didn’t have a personal doctor, up until this time I had been healthy, no colds flu’s nothing, so I went to a local doc-in-the-box. I told him my story and he scratched to the bottom of my foot and my big toe went straight up in a Babinski reflex. This concerned him so he referred me to a neurologist. When the Babinski reflex is present in a child older than 2 years or in an adult, it is often a sign of a central nervous system disorder. Although he didn’t tell me at this time I found out later. The neurologist did an MRI and found a lesion going from my T-11 to T-6. He too was concerned and thought this might be MS. So I went through steroid treatments that didn’t do any thing for me. This was in 1999. I didn’t know it but it was a good thing he didn’t prescribe any MS drugs, they can really cause a lot of trouble if you don’t have MS, in fact none of my doctors did I wasn’t prescribed anything else until I was re-diagnosed. I didn’t think he was the right doctor for me he mostly dealt with migraines and I though I really need a better doctor. My boss suggested are local Washington State University Hospital, they are well know for being innovating. Went to a neurologist there but wasn’t happy with him and I thought that if I had MS I should be going to a MS doctor, which I did. Fortunately he was a very good doctor that knew a lot about different neurological disorders. He has been my doctor ever since then in 2002. Meanwhile my ability to walk became increasingly difficult and I developed urinary incontinence and spasms in my legs. The owner of the company where I worked as well as my boss became increasing troubled by my inability to walk well. The owner suggested that I quit and take care of my self but I didn’t see any concern about my condition. I was like the knight in the Monty Python skit that even after getting severely wounded exclaimed, “I can still fight!” I didn’t see things from their perspective; I was hobbling around grabbing on to things to climb up stairs and onto the decks at work. Finally after a year of this they told me I had to quit, it was just to dangerous for me to work there, they were concerned I might fall on exposed re-bar or hurt myself running equipment. But she, the owner, set me up with counselors and got me on Cobra insurance, it is insurance at low cost to people that are on unemployment so I would still be covered. One nice thing that has really helped me was that through work, I was in a union, that I was vested having worked there more than 5 years, I was into my 6th year working there, so I would receive a pension. For the incontinence the Urologist showed me how to self catheterizes. That worked great no more wearing incontinence pads and still wetting my self and bed. Then for the spasms they started me on a drug called Baclofen. It is a highfalutin muscle re-laxer. It worked some. I was still having troubles with spasms. They told me about a intrathecal Baclofen pump. Liquid Baclofen that trough a catheter that is inserted in your spine injects the medication. Since it is more direct you can actually take less of the medication and it is more effective, micro grams instead of milligrams. I was taking three 20 milligram pills every three or four hours, that’s how long the drug lasts before it wears out. The trouble with it was at night even though I took some before going to bed after eight hour I was out of medication and would have to start over again taking the medication in the morning and then waiting for it to kick in so i could get on with my day. Meanwhile I went on Medicare and Medicaid and got a part time job in Market Research. So we went ahead and put in the pump. It is just a day surgery but it takes a few days to balance out the medication. I was in the hospital a week. The pumps last 7 years and I am on my third pump that was in 2003. It worked great! No more spasms or at least they were greatly reduced. The pump could be programmed so I could receive more Baclofen in the morning when I was stiff. The pump gets refilled every three to six months depending on the severity of the spasms; Baclofen is only good for six months before it needs to be replaced. I also take Morphine in the pump for pain. The Morphine in the pump is only good for three months so that’s how often I go in to get refills. The refill only takes about 15 minutes. There is a port on the side of the pump that is indented that they feel for, plus they have a guild that they place over the pump and position it with the catheter that comes out of the pump that they feel for. They first interrogate the pump with a programmer to see how much Baclofen you have used. Then they insert a needle through the port and take out what you haven’t used and then replace it with new Baclofen. The pump is smaller than a tuna can so it does stick out a little bit in your abdomen about 1/2 of an inch. I was always wondering what would happen if the pump went bad, well it happened. One night, it was a Friday of course! It started with my legs twitching every 30 seconds, I thought I was just have a relapse and took some Baclofen pills (I had them on hand for when I have extra spasms or in this case although I didn’t realize it at the time in case of emergencies) I waited for the Baclofen to kick in and waited took some more. Meanwhile I started to itch and I remembered that this was a sign of Baclofen withdraw. But of course it was Friday night and I couldn’t get a hold of any one. I wasn’t too concerned even though it can be dangerous to stop Baclofen suddenly; I figured that I would be OK since I had my back up Baclofen. So now I had to wait until Monday to do any thing and meanwhile the twitching continued, every 30 seconds all night long! I couldn’t really sleep that way I mostly was in a half sleep mode; it was a long night and long weekend. Monday at last! i called in and told them what was going on and got an appointment for Wednesday, I had to request a ride from Access are local transport for disabled. Go in Wednesday and they took some time to confirm it was indeed Baclofen withdraw. They kept me over night giving me more Baclofen. Thursday they did some scans to see if it was the pump going bad. There is an another port on the pump besides the one they use a a refill port that they tried to access but had trouble accessing and get any flow through it. So it was determined it was the pump. Now what to do repair or replace the pump? The pump I had was five years old so they determined to just replace the pump. The Medtronic’s people were there too, the people that provide and make the pump. So they got a new pump and Friday the doctors put it in. Then Saturday they made sure the balance was correct, and then I went home Sunday. I though all in all it went well and as fast as it could go. That was in December of 2014. Then back in 2006 I started to question my diagnoses of MS. I was told that I had Primary Progressive MS but I wasn’t “progressing”. I did progress to using a scooter for long distances and with the aid of cuffed crutches could walk about 50 feet before it was to painful, but that had been going on since 2003 an I hadn’t got any worse. So my doctor did some more tests and another MRI. The MRI still showed the same lesion in my spine but didn’t progress any further. But a new test had come out for a different disease that my doctor though I might have. So he did what is called an IgG test for Neuromyelitis Optica. It came back negative but he reexamined the diagnoses of MS and concluded that since I had one long lesion that I couldn’t have MS, MS is more spotty smaller lesions all around the body not just located in one place, if it was MS I should have had other lesions in different parts of my body including the brain especially since the initial MRI’s in 1999. It was more fitting in with the diagnoses of NMO, which since it wasn’t an exact fit I thought it also could be TM which my doctors agreed with, but since the treatment is the same they would go with the diagnoses. They put me on Azathioprine or Imuran, 50 milligrams three times a day. It reduces your white blood cell count which they believe that a high white blood cell count was the cause of the demeylination of my spinal cord that in turn caused the lesions to form on it casing the spasms and partial inability to walk well. Then I got a scooter for long distances, I had been using store scooter by that time the scooter work well, it was given to me by friends in my church. I had been given a micro van trough the MS society and was able to transport the scooter in it. It really was a gift from God my van that I had was leaking oil, I had to replace two quarts of oil every week. The micro van had hand controls (They consisted of a handle that was connected to the brake that could use my right hand to depress and brake and that also like a motor cycle had a had a hand throttle, I controlled the steering wheel with my left hand that had a knob on it to hold and steer with) and since I was having trouble driving my van switching my foot from the gas to the brake. I had an accident a couple of years earlier that I now am pretty sure was because of my leg problems. I was having to use my right hand to grab my leg and move it over to the brake, I was getting quite good at it, but one day I ran a stop sign. It was then with in a couple of weeks that the MS society and God came to my rescue. Then I was thinking of getting a new scooter and my doctors said that Medicare wanted me to have a wheel chair that could be use in and out of my apartment. So I got a power wheel chair. I didn’t know then what a blessing it would be in the future. I thank God for his looking out for me as he had all along in my illness. After a couple of years I started to wonder if I should just get rid of my car and use Access to get around. No car insurance, gas costs, and car repair, I had just spent $2,000 on car repairs. While I was considering that one day I was driving along on a four lane highway there was lots of traffic and I looked down for a second and when I looked up the traffic had stopped so I quickly turn into the bus lane (thank God there wasn’t a bus there) and missed crashing into the car ahead of me but I over steered and sideswiped a rockery on the side of the road, it totaled the car which was only worth about $600 anyway, at least that what I got in the insurance settlement, but my question about whether or not to ride Access was certainly answered! Been using them ever since, it works great gets me anywhere I want it just sometime take a little longer but you can’t beat it at $3.50 around trip. About a year later I started to think about my living conditions my rent was pretty low but I was concerned about it going up. (This was in 2010) There was a woman in my congregation that worked in subsidized housing and I ask her about it, she directed me to a web site for the Washington State Housing. I might add that in my continued blessings from God, my computer that I had gotten from when I worked construction died. I asked around in my congregation about getting another one, I didn’t know how to go about it I was thinking of getting a used one. One person in my congregation said he would look in to it and get back to me. I waited about a month and was wondering what was going on and I asked him, he surprised me and told me that he was going to get me a new one if I didn’t tell anyone about it, a very humble person. So he got me a Dell computer. I’ve had it a while and it still works great, he also got me a warranty with it so when it went bad a couple of times I didn’t have to pay for the repairs. What a blessing from God. Back to the housing situation. I put got the paper work for the housing and thought that I made to much money. I get SSDI and my income from work put me over the limit for housing. I told my friend that deals with subsidized housing that I thought I didn’t qualify she said, in a nice way, “You dummy your disabled you qualify just because of that.” So I submitted my application. She also told me that the housing people had just got an infuse of money from the state to remodel some units into disabled units. Normally it is a two years or more wait to get a unit but I got a response back in just a few months, I can’t remember how long but it wasn’t long, they had a unit for me. The rent is 28.5% of your income which as it turned out was about the same as I was paying already but it was a wheel chair accessible apartment and the rent would not go up unless my income did. I checked the apartment out and discovered that I could not fit my power wheel chair along side the toilet, very important! So they took a couple of months to correct the situation and I finally moved in. I told you about that because it was very interesting that within one month I lost the ability to walk altogether. If I hadn’t had a wheel chair accessible apartment I would have been in trouble I wouldn’t have been able to use the bathroom in my old apartment! I thank God for that think about the timing! I was using my computer and sitting in my easy chair, I had transferred from my scooter( I use both my scooter and my power wheel chair, I use the scooter around the house to transfer from it to my bed and the toilet.) I had to go to the doctor so I transferred from my chair to the scooter and then I was going to transfer to my wheel chair and couldn’t stand up! My knees would not lock to do the transfer as much as I tried. At lease I could transfer to my bed and the toilet from the scooter but it took me a day to figure out how to transfer to my wheel chair, a lot of praying! The arms on the side of the wheel chair lift up and I just put my scooter along side my wheel chair and transfer over, what a relief! So I have been that way since then and things have been OK up till now. I did have an ulcer on my bottom that took a while to cure even had a hospital stay and flap surgery; the ulcer went all the way to the bone! But I am OK now just doing things a little different to make sure it doesn’t happen again. That’s my story, I am pretty independent, I do my own shopping, some house cleaning, I have a person come in once a month to through clean the apartment and I get to my Kingdom Hall (church) twice a week and have people over once a week so I keep busy. It happened again I developed another ulcer this time on my left buttocks which was better in that I could change the bandage until I could go into the hospital for surgery. It took awhile but in the meantime I got a new wheel chair that tilts up to do pressure releases getting off my buttocks for the recommended three minutes every 20 minutes which I now do plus bed rest every two hours for one hour. I was only doing a minute and a half since it was only as long as I could do elevating myself with my arms which in the long run is not good for them. Anyway it was another two and half months stay in the hospital one month in the hospital and month and a half in rehabilitation. I am not going back to work as that is why I think I developed another ulcer, I could not do as good a pressure release at work as long as I needed to at least so I thought.


  1. Taylor on April 6, 2020 at 4:35 pm

    Hello, I am your spiritual sister. Thank you for your story. I gave me courage and strength to face this new challenge!

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