I was prowling around Wal-Mart one day in March of 2014. I was by myself and really wasn’t after anything important, I was just sort of filling up some time while Belle was at cheer. Suddenly I had this incredibly sharp pain in my right temple. I actually saw stars. It was quick, though and there was no real lingering pain. I came home after I picked Belle up and told Ken what had happened. I had been having a few vaso-spasms in my brian, they were painless and usually made me dizzy. This did neither. I made light of it and neither of us gave it much more thought. I woke up the next morning and noticed I had a vision problem. It wasn’t that things were blurry, rather I had sort of a vertical line across my vision. They next day it was worse. I told Ken that I thought this was odd and I called my family doctor and we went in that day.
Dr. Green’s initial reaction was that I most likely had a detached retina. He made an appointment with an optomistrist in town. At this appointment, he basically just looked in my eye. He did a visual acuities test and reported that he could see something but that I needed to be seen by an opthamologist. Dr. Green made that appointment for the next day.
I went and saw Dr. Nix the next day. He is the cutest thing! He ran several tests and gave me some eye drops and scheduled an appointment for the next day so he could do some more extensive testing. He did another visual test that day and that was the first thing he did at my second appointment. At the second appointment, I was completely blind in my right eye. That was the first time that Multiple Sclerosis was mentioned.
An MRI was ordered and an appointment was made with a neurologist. Now I should explain here that I was completely freaked out. To start with, I was blind in one eye. Add to that, I had to have an MRI done and then, of course, I was facing the possibility of being diagnosed with a debilitating disease. I had the MRI done the next day and the appointment with the neurologist later in the week. I would also like to point out that I thought I would have an MRI and the doctor would look at the test and say ‘Yes, you have MS’ or ‘NO, you don’t have MS’. No one tells you that this is going to take a YEAR to diagnose.
When the results came back from the MRI, I was diagnosed with Sudden Onset Optic Neuritis. I had an extensive history and physical done that day and then I was sent home. We would ‘wait and see’. Really?? So I went home to a freaked out family, freaked out myself and we waited.
The stress from all of this caused me to have a lot of coronary artery spasms (CAS). I ended up in the hospital and when I saw my family doctor and we talked about what all was going on, he ordered a lumbar puncture. This scared the crap out of me. Of course I turned into Dr. Google. Sometimes the internet is a bad place to roam around. The day arrived to have this done and I was a basket case! It wasn’t even that bad. The worst part of it was how HOT and shaky I got. Have you ever had a part of your body go so asleep that it tingled madly and you couldn’t move that part of your body? That’s what happened to me during this procedure. My lips and arms and hands were tingling so much that I couldn’t move my lips or my hands. Of course I came a bit unglued, and it made me cry. I don’t ever complain. I try to be as good a patient as I can be. The nurse in there with me noticed I was crying and came around to my face and asked me if everything was ok. I told him what was going on and he said that sometimes happens. He got me cold wash cloths and placed them on my neck and gave me one for each hand. My hands were in this claw-like state, so he just laid them across the back of my hands. Now that I knew this was a normal reaction and I wasn’t going to be paralyzed (yes, I often go off the deep end), I calmed right down. The tingling lasted until he removed the catheter and it quit almost instantly.
I waited three weeks on the results. They came back negative. They look for oligoclonal bands in the CFS to indicate inflammation related proteins. There were no bands present. This however does not definitavly rule out MS. There is no Multiple Sclerosis test. They basically rule out everything else that could be wrong based on test results. They take all of your symptoms and test results and put together a puzzle. If all the puzzle pieces fit together a certain way, you get an MS diagnosis. What I didn’t know then was that you will not have those bands present if you are not in a relapse at the time of the lumbar puncture. Based on these findings, we started testing for EVERYTHING else. I gave 14 viles of blood and they got busy. Slowly as the results came in, everything came back negative. So I waited.
I woke up one morning and got into the shower. As I was washing my left side, I noticed that I was numb. In fact, I was numb from my armpit to my feet. I was numb from my belly button to my spine on the left side. I called my doctor and he did an x-ray. He determined that I just had severe muscle spasms and they were pressing on my nerves and making me numb. That’s what it had to be. I didn’t have MS, remember? I got muscle relaxers and was sent home.
My heath slowly declined until I was hardly getting out of bed. I started having this new issue. My eyes ‘clicked’. At that time, it was the only was I could describe it. I told Ken and my doctor and I got an eye roll. This was in October. It steadily got worse, I kept complaining that something was wrong. No one heard me. That’s not fair, I think they heard me, they just didn’t have the answers. In March, I started having artery spasms again and ended up in a cluster. I told one of the doctors I saw about my ‘clicking’. I had a neuro consult and she requested an MRI. The news wasn’t good. I had at least six new lesions. Another lumbar puncture was ordered. It came back positive. I had MS.
I knew I had this disease way before anyone else did. I knew there was something terribly wrong with my body. It added up to me long before I got the diagnosis. Still, hearing the doctor say “You have multiple sclerosis” was devastating. Mother and Belle were with me at the doctor’s office when he delivered the news. In my head I knew it, so I could handle it. Sometimes I am so silly. It made me cry. I think I scared my poor Belle. I cried, she cried.
We began discussing treatments and we decided to go with Copaxone. An injection three times a week. My neurologist wrote several drug options up on a little dry erase board, quickly hit the high notes for each drug and based on minimal side effects and three injections at home instead of five injections or going to an infusion center, I chose the Copaxone. As I sit here a year later, worsening all the time, I look back and think “Wasn’t this an odd way to decided what medicine would be best for me?” How in the hell would I know that this is one of the weakest MS medicines there are? How would I know that I should have been through a myriad of testing to set a base line to follow to see how quickly I am declining? How was I to know that I needed physical therapy and I needed to stay out of the heat completely? We discussed none of this.
I had been on the Copaxone for about two months when I began to stumble and fall. I made a trip to Indiana to see Mother and Kendall and fell my first night there. When I came home, I went and saw my neurologist and I told him my concerns about falling and stumbling. He shrugged his shoulders, never looked up from his little computer and said “You have MS.”. End of conversation. Ok…..
The next week I left with Mother and Belle to go to Hilton Head to see my brother. I laid on the beach for ten days. I swam in the ocean, went shopping, ate good food, visited with my family. I had a wonderful time. I felt cleansed by the strong ocean waves and the hot sand. I got a short haircut, an excellent tan and came home feeling refreshed and renewed. Two days after I got home, I couldn’t move my legs at all.
Ken, Belle and I went to the grocery store. They were walking behind me and Belle noticed my legs buckling. She asked what was wrong and I told her I thought I was just tired. We got home and when I stepped out of the truck, I fell to the ground. I got back up by myself and got into the house. Ken told me to sit on the couch and just rest a minute. I sat there about five minutes and I had to pee. I got up to go to the bathroom and I couldn’t stand. I lost the use of my legs in about a twenty-minute time span.
I was admitted to the hospital and put on high dose steroids. I went in on a Friday and on Sunday, Ken came into work and he asked me if I had seen a neurologist yet and I told him no, so far I had only seen the hospitalist. Ken started throwing a fit and before the evening was over, Dr Long came into see me. But…Only to show a stack of papers to me he had in his hand explaining that he had eight new consults in the hospital and he didn’t have time to see me. Holy crap. Ken was livid. He started a ball rolling that eventually went to the Hospital Administrator. After Dr Long figured out that I was Ken’s wife, he apologized to Ken. He said if he would have known I was Ken’s wife, he would have seen me and not reacted that way. Ken told him no patient should be treated like that. I am now in the process of finding a new neurologist.
After spending a week in the hospital, I had to go to rehab. That was honestly one of the hardest things I’ve even done. I had been gone to South Carolina for ten days, home two days, in the hospital for eight days and now they were talking about rehab for three weeks. I threw a big ol’ fit. I missed my kids, I missed my dogs, I missed my house. I didn’t want to do that!! Everyone tiptoed around me like I was a petulant child not getting her way and bombarded me into going.
I went in an ambulance and Ken followed. As soon as I was settled in my room,.he left to take things home and bring other things back. When he left, one of the therapists came in and told me that I had to take a shower. I told her I had just taken one at the hospital. No matter, I had to take one now. In front of her. I had to get myself undressed, bathe, dry off and get dressed again in front of her. I was furious. I was embarrassed. I was humiliated. I suddenly knew what it felt like to no longer be in control at all. After that ordeal was complete, I got my schedule for the next day. Finally everyone was gone and I just laid there and prayed. I prayed simply to get better so I could go home.
At about four o’clock the next morning, I was abruptly awakened when three aids came bustling into the room, flipping the light on and snatching the curtain back on my roommates side of the room. Did I forget to tell you I had a roommate? I did. I was in the bed by the door, I had a curtain all the way around my bed and a cunning little television on an arm that I could position any way I liked it. I was in a little tent. That’s all there was too it. It was HOT!!! And now the entire room smelled horrible!! The lady next to me was sick and she had diarrhea. I was HOT and sick at my stomach from the smell and still horrified that I had to bathe in front of someone and I wanted my DOGS! I sent Ken a text. I told him to come and get me RIGHT NOW!! I WAS NOT DOING THIS!!! Then I texted Kennedy, then Kade. Someone needed to come and get me. This wasn’t a prison, or Russia. I didn’t have to stay here!!
Needless to say, everyone came. I didn’t get to leave. They very reasonably reasoned with me. The doctor reasoned with me. Everyone Poo Poo’d me until I was so damn mad I just sat there and steamed.
The best thing I ever did was stay. The doctor there was wonderful. He did all of the baseline tests to see where I was. I found out I have a left side deficit. My left foot drops (why I stumbled) and I found out that the left side of my tongue doesn’t work properly. I have muscle weakness there so I don’t swallow well. I learned how to compensate for both of those things. I learned that my pupils don’t respond correctly. They don’t dilate as they should. I am supposed to be in lightened areas as much as I can to force them to dilate somewhat. I learned that the heat will do so much harm. Those ten days on the beach? They weren’t soothing me, they were cooking me. Heat is the enemy. I am not even to keep the house too warm or to wrap up in a blanket and get my body too hot. I have a frog tog to help with that and I used a cool cloth a lot. I prayed for God to heal me so I could go home. Nope. I got to stay and I learned more than I had about my body in the entire previous year. Oh, and the sweetest little nurse found a fan for me. Than improved my attitude greatly.
I did it again, though. I over did it and over heated this Memorial Day and ended up back in the hospital. I have new lesions. I have formed several new lesions since I have been on the Copaxone so it isn’t working. It is a very low strength medicine and I need something stronger. My MS seems to be more aggressive than I thought. I have an appointment on August 24th with an MS specialist in Little Rock. I found an MS clinic in the Boston area that I am planning on going to. They have the most up to date information and treatment in the US. I have filed for disability.I now have optic neuritis in both eyes and my vision is very poor. When I am approved for disability, I plan on going to Boston. It will be an expensive trip.
Until then, I go out on the lake when it is cool. I love on my dogs. I enjoy my children and grandchildren. I am trying not to be discouraged. That seems to be really hard for me. I am thankful every day for my family and friends. I am also mad every day because I feel like crap. I am working on it. Thank God for his grace.