This Sucks - MS 101

A place to vent -- both the good and bad -- in coping with this life altering disease.

Friday, July 29, 2005

Hi Everyone!

Hello,
My name is Brandi and I wanted to start a place for me and others to vent, cry, and be mad but also be happy and share our joyous occasions.

I am going to start off with what I have been through in the last year. In March of 2004 I started to feel right arm numbness (pins and needles feeling). I thought it would go away, but it didn't. After a month, my mother told me that I needed to go see a doctor. So I went to my great family physician and he gave me a physical, then sent me to the hospital to have an MRI to make sure that it was not a tumor. After the first MRI, he came into my room, sat on my bed (He and I are very close. He has known me since I was little -- I was a flower girl in his wedding.) and proceeded to tell me that it could be one of two things: MS or "Disseminating Encephilomylitis." He said that he needed to order another MRI of my C -Spine. I got so bad that the whole right side of my body didn't want to move.

I had HUGE doses of Solumedrol (2 grams a day IV) as well as 5 days worth of IVIG, Physical Therapy and Occupational Therapy. My mother, who lives in PA, came down. She is an RN and knows the medical terms and can explain it to the rest of my family and friends, who were very worried. She also comforted me through the lumbar puncture and the stresses of not knowing.

I was finally diagnosed with a sure diagnosis of Multiple Sclerosis on April 27th of 2004. When the doctor told me, I remember sitting there quietly thinking, "Oh my God, what am I going to do now?" I walked out of the office and sat in my grandfathers car. He was the first person that I told. I love my grandfather, but he is not the best one to comfort you in stressful situations!

After that, I had to go back in the hospital in June for another relapse (while on Rebif) for another weeks of Solumedol, IVIG and a comfortable stay in a comfortable bed! Then I started getting all these bruises all over the place. My mother, the RN, asked the MD for a liver profile. Sure enough... My enzymes where sky high! So... no more Rebif and off to Hopkins I go.

In July, the neurologist at Hopkins recommended Copaxone and told me that I "would most likely be back to work by fall." HA! After that, another relapse came in August, more Solumedrol, hold the IVIG please. Next was October, more Solumedrol but can you make that "to go" please? And hey did you happen to notice that it is FALL and I am not only not back to work, but I can't even walk without a walker?

Fast forward through 4 more relapses each with their own out paitent Solumedrol treatments to February of 2005. On February 28 th I got sick -- nausea, vomiting ect and I have been in a downward sprial since. I had one last dose of Solumedrol in early March, but by now, we know that they are doing me no good. I relapse with or without them. When I got to the point where I could not hold my head up, or feed myself, I knew I had to go to Mom's.

My mom got on the phone and called my neruo in NC and the one at Hopkins and threw a fit until they finally ordered another MRI. The MRI of my brain showed some new lesions and some of the old ones, but the MRI of my C-Spine showed HUGE lesions in my cerebellum and spine. No wonder I couldn't walk, stand, even SIT upright by myself, swallow, feed myself or hardly even speak! Sso, in April of 2005, my NC neuro decided to put me on Novantrone - after my mom refused to let him do nothing.

Unfortunately, I relaspsed again before I could get the novantrone. So, back to Mom's I went after being home for only 10 days. We called the Hopkins neuro and told him about the Novantrone and he told us... wait for it... He told us that the NC neurologist told him that I was EXAGGERATING my symptoms!!!

My mom went BALLISTIC! She told the Hopkins neuro that she was an ICU nurse with 16 years experience and that her daughter (that would be me) could not even hold her head up when she got there! She said that she was not used to people "doubting her veracity" which I guess me thinking she is lying. Anyway, he got us in to see him on his next clinic appointment. By now, I was using my wheelchair all the time and only able to help piviot to the bed. Bed pans truly suck, by the way.

So, we saw him on May 24th. He took one look at my MRI and a whole different expression came across his face. He started talking about chemotherapy and a study they were doing for people with "Aggressive" disease. We talked about it a great deal and decided that we would try to get in the study, as maybe it could help me and someone else later on down the line. But then we found out that I was too young. See, you have to be 21 and I am only 20. So, we had to get special permission for me to be in the study which took FOREVER.

Finally on July 19th I had my screening MRI to get into the study. You have to have 2 active (enhancing) lesions on your MRI to be in the study, but by July, I was doing much better i.e. taking steps out of the wheelchair using my walker again and trying to walk 60 feet a day so that I could meet the EDSS level you had to be in order to be in the study. Sooo... I only had 1 enhancing lesion. Figures huh? Anyway, we talked to my neuro and he was disappointed . He said we could wait 2 weeks and try again, but we were afraid that if I relapse again in that time, I will have the lesion load, but I wont be able to meet the EDSS score. Plus, we all think that we are wasting too much time (and brain tissue) the neruo included. So, we decided on ... you guessed it NOVANTRONE! Back to where I was in April!

Now, we are waiting for the neuro to set up the N with Hopkins Oncology. Hopefully that will be sometime next week and I will be able to go home for a while before my next dose. However, my mom says I am NEVER to see that quack of a neurologist in NC again!

SO, there we are... the Readers Digest condensed version of my life as an MS survivor.

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