Myasthenia Gravis Central Texas Support Group

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Home Our Personal Stories This Is My Story - Tricia Harrison

This Is My Story - Tricia Harrison

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I was 34 when I was diagnosed with MG. I was a very healthy young lady, who worked at least 12 hours a day, as a hairstylist. I have a wonderful understanding Husband and two beautiful kids.

I woke up one morning with a droopy eyelid that I had never had before. I went to work as normal, but it seemed to get worse. I also started having alot of tiredness about me that I had not experienced before, but I didn't relate that to anything until later. I didn't know what to do, and my husband thought I was fine. I let it go on for about a week or two, but it kept getting worse.

I finely gave up and went to an ophthalmologist, and he could not figure it out either. A couple of days later I went to a oral surgeon thinking that it was a abscessed tooth. it wasn't that either. In January of 2005 I went to the emergency room for not being able to breath, weakness, and heart burn really bad. They ran all kinds of tests on me. EKG's, CT scans, blood work, but still could not find a diagnosis. I had a regular Gastroenterologist, so he came and they did a endoscopy to find out that I had an ulcer, raw esophagus, and reflux. He gave me some medicine and released me to go home from the hospital. Of course I was not convinced that is what was wrong with me, and I still did not feel any better.

As a couple of weeks went by I started having double vision. That was a whole new experience in itself. Try working 12 hours a day trying to find the right angle to cut hair having double vision! Luckily I did not cut or mess anyone up. I was also beginning to notice that my arms were getting weaker and it was harder for me to walk and stand up all day. I didn't share this with anyone because I thought maybe I was working to hard and needed to start slowing down. I followed my gut instinct and asked my wonderful boss if I could arrange my schedule to go home and lie down for awhile during the slow part of the day. I would actually take a 2 hr nap. This was not like me at all. I then soon followed up with a visit to my PCP(Primary Care Physician). She was concerned also, so she did her series of blood work and test.

Not knowing what to do, since she didn't find anything abnormal in my blood work, she sent me to a neurologist. As neurologist do he did a series of test. He did not have a very good bedside manor, and was very rough doing his STUPID tests. I think he really enjoyed pricking me in the face, arms, and legs with his stupid needles. He also did a MAJOR blood work test. 17 vials of blood in all. Of course my blood work did not show I had MG, he proceeded to tell me that all my symptoms showed that I did have MG. He set me up to start having the treatments called IVIG. Which is a bunch of proteins from alot of different donors blood that is injected through an IV drip for about 4 to 6 hrs. They freeze it so it is quite cold when it goes in. It hurt and it made me feel terrible while I was receiving the treatment. After the treatment I had a terrible headache and went home to take a really long nap.

I had a series of 5 in one week and and by the next week I was worse. My eye went crooked and I could not drive anymore. I told the nurse what kind of side effects I was having, and how concerned my husband and I were. The nurse, that was administering the treatments, said " maybe we should not give you anymore", and ran next door to talk to the doctor. The doctor said that it should be helping to try it anyway. I was not accepting that answer so Dusten, my husband and I walked out of there for the last time that day not receiving that treatment. Dusten found a doctor that specialized in MG on the internet that afternoon. He was located in the Medical Center of Houston downtown. It took about 2 weeks to be able to get a appointment with him. Because I am very bull-headed I continued to work full time. My boss was very concerned about me, but knowing how I was let me work but kept a close eye on me. I am very thankful to this day for such a caring lady she is.

I wore a eye patch and continued working, because like I said I am very bull headed and don't know when to stop. Once I was able to get into seeing the other Neurologist, he did his series of tests and agreed I had MG as well. He immediately put me on 60mgs of prednizone. I did improve over a couple of weeks but still did not feel 100%. He gradually brought me down off of the prednizone. This takes a very long time, at least a year. You gain so much weight, no matter if you diet and exercise. That is if you have the energy to exercise. You are very moody, and you don't understand why you feel like a DOG. Depression sets in as well. I went every month back to home to see if I was becoming stable or not. The doctor seemed to think so, but I still did not feel great. He suggested I get on a antidepressant. I said ''no" of course because I don't like those kind of drugs. I felt like i could handle it on my own.

I was very angry with God and myself through this whole ordeal. I was very depressed and was terrible to my family and friends. I felt like nobody understood. I think back now maybe I should have gotten on some antidepressants. Maybe they would have helped with my mood. Of course when you take prednizone it makes everything in your body go haywire. I grew hair were I didn't want it, my hair on my head fell out terribly, and it counteracted with my hormone replacement drugs I was taking. Honestly you are just miserable all the time.

In the summer of 2006 I ended up having to quite my job of doing hair. I was devastated. This was my passion. I loved doing hair more than anything on earth. I loved my clientele, people I worked with, and the job in itself. My family soon moved to Austin, due to my husband transferring with IBM. This was a transition in itself as well. I had now no friends, I was in a new city were I knew were nothing was, and had to find a new church as well. Talk about becoming more depressed. This made me start feeling worse all over again. You should not have stress in your live. This is a BIG NO NO. It can make you relapse something fierce. I soon turned everything over to God and I started feeling a little better.

In the summer of 2007 I kept my 2 little nieces for the summer. We went to the pool everyday. I was developing a great tan. I went to Las Vegas with my ex-coworkers for a hair convention, and laid out in the sun there as well. Before I left Las Vegas, I started feeling very weak again. I came home and rested alot. I didn't know why I was feeling so terrible. I had started feeling great before the summer started up. My husband looked up MG on the web and said that to much sun, and heat would cause MG to flare up. Great I said, I sure had had my fare share. So I started looking for a PCP here in Austin. I found one and told her all about my history. She said I needed to go see a neurologist, because she didn't know to much about my disease. She suggested a Dr. Nolan. I looked him up on the web and he was one of the top doctors, here in Austin, that specialized in MG, so I gave him a shot. He did his series of STUPID test, and put me back on prednizone. I still did not feel great, and started having trouble breathing. I could not walk from one room to the next. He said there is something we can do and it is called plasmapheresis, or IVIG treatments. I told him about what had happened the last time I did IVIG and he said than I guess plasmapheresis will be the answer. He put me in the hospital. There they put a port in my chest and start doing plasmapheresis. This is were they take out your blood run it thru a machine, while they are also injecting Albumin, Saline, plus Calcium, then put your blood back in. I did one treatment and the machine kept clogging up, so they had to stop it. The next day they came in to do the treatment again, after about 30 min. I started having a reaction where my blood pressure dropped to 50/20 and nearly died. They stopped the machine and rushed me to the ICU. They brought in a allergy specialist who said that I could not be allergic to the treatment since I didn't have any visual skin signs. The next day they started the treatment again and within 5 min I started feeling the same way as the day before. They stopped the treatment again and went to find the dialysis doctor. By this time I had lost alot of blood, because it was stuck in the machine, and became anemic. The dialysis doctor suggested we use real blood plasma instead of the albumin. The next day I received the plasma and had no reaction, except that my blood kept clotting the machine. I had a total of 6 treatments in all over a period of a week. I grew stronger and stronger each day. The dialysis doctor believes the reaction I had was because of the Citrate of Magnesium. So for now we still don't know if it is the Albumin or the Citrate of Magnesium.

I returned to my neurologist 2 weeks later, although I had improved I still did not feel wonderful. He started me on a drug called CelCept. This is a drug that they use on kidney transplant patients to keep them out of rejection. It lowers your immune system so that hopefully your body will quite fighting itself.He felt that the prednizone may have started a reverse reaction so he started weening me off. After a period of about 3 months, which takes the Celcept to work, I was still feeling terrible.He told me he didn't feel like he could help me anymore so he suggested I go see his professor at Southwestern State in Dallas. He had studied under him and he was a master at MG. So off we went to Dallas to see Dr. Wolf's associate Dr. Nations, since I could not get in with Dr. Wolf. Of course she had to do her series of STUPID tests and run all kinds of blood work as well. Although I have MG it has never showed up in my blood work, I have all the symptoms, so they decided that I must have it. She slowed my process of coming down off of prednizone. This process takes forever. It will also remain in your system for up to 18 months after you have taken your last dose. Dr. Nations took me off of CelCept and put me on a drug that is called Prograf. This is also a anti-rejection medicine, and also can cause cancer later down the road. I am on the lowest dose possible which is 3mgs. I am now completely off of prednisone and am starting to feel better, although I do not have 100% of my strength back, I feel that I am on my way to beating this.

Just remember don't let MG get you down. Your can and will with the help of friends and family fight this. You may not always feel great but you can achieve anything you set you mind to do. When you go to the MG support group meeting and listen to the others talk about themselves and what they are going through as well, you don't feel so alone anymore. If you are like me you will have a bad attitude and won't want to go, but listen to your family and friends and do it. It will help I promise!

If you have any questions, please feel free to contact me.

Thanks for reading my story,

Tricia Harrison