I was discharged from the hospital two days later with 3 doses of Sol-u-medrol in my veins. The nurse came back to the house the following day to start a new IV and train us on how to administer the meds. Luckily, my sister came to visit and was more than willing to play nurse for the weekend. Mike lucked out and didn't even have to watch.
She was there for the weekend and before she left, my parents flew in to help with the kids, and the housework, and just to help us find our new normal.
They were here for a week and we tackled more stuff that week than I had done in months. We had a birthday party, got haircuts, they chaffered me to multiple appointments, and Mike and I even got to go out for dinner together.
Wednesday, August 8, 2012
Monday, August 6, 2012
Happy Birthday
Did I mention to you that all of this IV, passing out, trip to the hospital happened to fall on my daughter's 5th birthday? Needless to say, it was much harder on my husband than myself.
Between picking up the girls, explaining to them that I was in the hospital but OK, carting them off to a swim meet, picking up cupcakes, and coming to visit me in the hospital, I'd say he earned his stripes that day and then some.
Thanks to him, we were able to sing Happy Birthday and enjoy cake together. Thanks Babe, I couldn't do anything without you! I LOVE YOU!
Between picking up the girls, explaining to them that I was in the hospital but OK, carting them off to a swim meet, picking up cupcakes, and coming to visit me in the hospital, I'd say he earned his stripes that day and then some.
Thanks to him, we were able to sing Happy Birthday and enjoy cake together. Thanks Babe, I couldn't do anything without you! I LOVE YOU!
Sunday, August 5, 2012
Treatment
Dr. Williams sent me home to start a 5 day course of high-dose intravenous steroids. There would be a nurse coming to our house to insert a pick line and train us in administering the medicine every day. I wasn't too thrilled with the prospect of my "run at the sight of needles" husband getting trained on how to administer the steroids but I knew he could do it.
Ultimately, he lucked out. After the nurse inserted the IV, I started to not feel well and ended up passing out on her. They spoke to my doctor and they all agreed that it would be best for me to have my first doses in the hospital where I could be monitored.
Thus, they called 911 and the lovely firemen came and carried me out on a stretcher. Off we went to the ER.
Ultimately, he lucked out. After the nurse inserted the IV, I started to not feel well and ended up passing out on her. They spoke to my doctor and they all agreed that it would be best for me to have my first doses in the hospital where I could be monitored.
Thus, they called 911 and the lovely firemen came and carried me out on a stretcher. Off we went to the ER.
Friday, August 3, 2012
Meeting Dr.Williams
On Monday, July 16th, Mike and I took the train into Manhattan for my appointment. I was in no condition to walk the two miles, so we hailed a cab and in just a few short minutes, we were there. It's a beautiful facility, only blocks from Central Park.
I can honestly say, that I have never felt more studied and scrutinized than my first visit with Dr. Williams. I think we were with him for at least an hour and a half. I have to tell you now that this man is a saint, Dr. Armistead Williams III. He is young and he reminds me of Doogie Houser. He always thinks before he speaks, he is incredibly bright, and he looks at every angle. At the end of the visit, he wanted to see a few more brain images so we headed back for the train to make our way home.
I had the MRI done that night and I took the images back to his office the next day.
Well, you have probably heard by now... that day was my diagnosis day. I was diagnosed with Multiple Sclerosis exactly one month shy of my 30th birthday. Sometimes life is funny like that.
I can honestly say, that I have never felt more studied and scrutinized than my first visit with Dr. Williams. I think we were with him for at least an hour and a half. I have to tell you now that this man is a saint, Dr. Armistead Williams III. He is young and he reminds me of Doogie Houser. He always thinks before he speaks, he is incredibly bright, and he looks at every angle. At the end of the visit, he wanted to see a few more brain images so we headed back for the train to make our way home.
I had the MRI done that night and I took the images back to his office the next day.
Well, you have probably heard by now... that day was my diagnosis day. I was diagnosed with Multiple Sclerosis exactly one month shy of my 30th birthday. Sometimes life is funny like that.
Wednesday, August 1, 2012
Eye problems
On Friday July 13th, I started having sharp pains in my left eye. It seemed as though the headaches were now focusing their energy directly behind one eye. I called Dr. Newman right away and he was concerned. He wanted me to see an ophthalmologist that day. Because it was a Friday afternoon in the summertime, it was impossible to get anyone to answer a phone, let alone take an appointment, so Dr. Newman suggested going to the Wills Eye ER in Philadelphia. He wanted me to go as soon as possible so I called Michael and he started making his way home from Delaware.
I had an hour to find a place for the girls. Luckily, we have some of the best friends who have helped us over and over again, and this time was no different. She took the girls without even blinking.
By the time Mike made his way home, I was ready to go.
A quick drive across the bridge and four and a half hours in a waiting room, I was seen by an ophthalmologist and was given a diagnosis of Optic Neuritis.
They sat us down and started explaining what that meant. They were dancing around the words "Multiple Sclerosis". I told them I had an appointment with a MS neurologist on Monday and that I would follow up with him.
I had an hour to find a place for the girls. Luckily, we have some of the best friends who have helped us over and over again, and this time was no different. She took the girls without even blinking.
By the time Mike made his way home, I was ready to go.
A quick drive across the bridge and four and a half hours in a waiting room, I was seen by an ophthalmologist and was given a diagnosis of Optic Neuritis.
They sat us down and started explaining what that meant. They were dancing around the words "Multiple Sclerosis". I told them I had an appointment with a MS neurologist on Monday and that I would follow up with him.
Sunday, July 22, 2012
IMSMP
Dr. Newman got me an appointment with Dr. Williams for the following week. I should mention that this is nearly impossible. The four doctors at the International Multiple Sclerosis Management Practice (IMSMP) usually have a minimum six month wait to be seen.
Again we did our research and I found this on their website.
"50 States, 45 Countries, 5 Continents: Patients travel from around the globe for the one on one experience at the IMSMP, where a team of expertly trained healthcare professionals provide an unparalleled level of care to our patients. Our mission is to provide the best care in the world for people with Multiple Sclerosis. By transforming denial into awareness, anger into determination, and despair into hope, we help them take back their lives."
It's exactly what I needed to hear at that moment, and I knew I had fallen into the right hands.
Again we did our research and I found this on their website.
"50 States, 45 Countries, 5 Continents: Patients travel from around the globe for the one on one experience at the IMSMP, where a team of expertly trained healthcare professionals provide an unparalleled level of care to our patients. Our mission is to provide the best care in the world for people with Multiple Sclerosis. By transforming denial into awareness, anger into determination, and despair into hope, we help them take back their lives."
It's exactly what I needed to hear at that moment, and I knew I had fallen into the right hands.
Saturday, July 21, 2012
Dr. Newman
Thanks to a good friend, I got an appointment quickly. We took the trip to NYC on July 2nd, 2012 to see Dr. Newman at the Headache Institute. But we did some research before we went. It turns out, he is one of the best doctors in the country specifically for migraines. I have never had a doctor truly listen to the whole story from the beginning. He wanted to know everything. He did a neurological exam and caught more things in 15 minutes than the other doctors combined. I couldn't walk heal to toe without falling over. My eyes jerked around when I looked all the way to one side. I had nystagmis in both eyes.
He changed up the medications some, and sent me home with a script for more MRIs. He would look at the results of all the tests and get back to me. We went home with some hope that we would get some answers soon.
I did the MRI's like ordered on July 6th. It was for an brain MRI with and without contrast.
Dr. Newman got a copy of my new scan a few days later and called with news. He saw something in my MRI with contrast that he didn't like, but he thought I should see a friend of his, Dr. Williams at the International Multiple Sclerosis Institute.
He changed up the medications some, and sent me home with a script for more MRIs. He would look at the results of all the tests and get back to me. We went home with some hope that we would get some answers soon.
I did the MRI's like ordered on July 6th. It was for an brain MRI with and without contrast.
Dr. Newman got a copy of my new scan a few days later and called with news. He saw something in my MRI with contrast that he didn't like, but he thought I should see a friend of his, Dr. Williams at the International Multiple Sclerosis Institute.
Thursday, July 19, 2012
Back to the beginning
I have been having annoying headaches for several months, maybe longer. I wasn't worried and life was busy so I kept taking my Excedrin migraine, and eventually it stopped working. Then in November of 2011, I thought I was having problems with my eyes, so I made an appointment with an eye doctor. I wanted to get my eyes checked and to get a prescription for new glasses. I did have a significant change in my prescription, so I got a new pair of glasses, and I started wearing them everyday. I was hoping to see some headache improvement with the new glasses. Unfortunately, the headaches were still present.
On May 18th, 2012, I went to my family doctor to get medical help with the headaches. He gave me a RX for flubiprofen. He also ordered my first brain MRI. He said we needed to check for a brain tumor. The MRI came back with nonspecific periventricular white matter abnormalities. (In Haley terms, there were some spots on my brain, and it couldn't rule out a demylinating disease, such as MS and Parkinson's) He told me that many people have theses white spots and it's nothing to be concerned about. So I wasn't. I didn't think I needed to see a neuro at that time. The doctor thought they were stress headaches, so I was trying my best to be stress free.
The RX of Flurbiprofen wasn't improving the headaches so I discontinued that.
I moved on to figure out my headaches. I tried chiropractic care, acupuncture, and massage. They all made me feel better short term but nothing helped long term.
On June 16th I had been sick in bed for 3 days with dizziness, nausea, and no appetite. I was the worst headache of my life! It hurt to move my head. Mornings were much worse than afternoons. I wore my sunglasses around the clock, both inside and outside of the house.
I went and saw my family doctor that morning. She diagnosed me with a migraine headache and sent me home with samples of Zomig. I took one right away and then the other one in two hours. I didn't touch my headache at all. The next night I ended up in Virtua's ER because the headaches were too much for me. At the ER, I was given an IV steroid, some pain meds, and Benadryl. Then they took me to have a CAT scan of my brain. The CAT scan said that I have sinusitis. Nothing to help figure out these headaches. I was so drugged and tired after the CAT scan they sent me home in the wee hours of the morning armed with a variety of drugs to prevent the headaches from returning.
Nothing worked long term. I ended up back in the ER a couple more times. Trying the ER at Jefferson and again at Virtua, before we threw our hands up. It seemed like no one was listening. The drugs they were giving me weren't helping at all. I was still in bed 80% of everyday. My mother in law was here to help me with the girls so my husband could go into work.
My in laws have a doctor friend in New York. He suggested trying to get me an appointment with a headache specialist in NYC. He had an old friend that he could call. We jumped on the offer and I had an appointment within a week.
(more of my story to come later)
On May 18th, 2012, I went to my family doctor to get medical help with the headaches. He gave me a RX for flubiprofen. He also ordered my first brain MRI. He said we needed to check for a brain tumor. The MRI came back with nonspecific periventricular white matter abnormalities. (In Haley terms, there were some spots on my brain, and it couldn't rule out a demylinating disease, such as MS and Parkinson's) He told me that many people have theses white spots and it's nothing to be concerned about. So I wasn't. I didn't think I needed to see a neuro at that time. The doctor thought they were stress headaches, so I was trying my best to be stress free.
The RX of Flurbiprofen wasn't improving the headaches so I discontinued that.
I moved on to figure out my headaches. I tried chiropractic care, acupuncture, and massage. They all made me feel better short term but nothing helped long term.
On June 16th I had been sick in bed for 3 days with dizziness, nausea, and no appetite. I was the worst headache of my life! It hurt to move my head. Mornings were much worse than afternoons. I wore my sunglasses around the clock, both inside and outside of the house.
I went and saw my family doctor that morning. She diagnosed me with a migraine headache and sent me home with samples of Zomig. I took one right away and then the other one in two hours. I didn't touch my headache at all. The next night I ended up in Virtua's ER because the headaches were too much for me. At the ER, I was given an IV steroid, some pain meds, and Benadryl. Then they took me to have a CAT scan of my brain. The CAT scan said that I have sinusitis. Nothing to help figure out these headaches. I was so drugged and tired after the CAT scan they sent me home in the wee hours of the morning armed with a variety of drugs to prevent the headaches from returning.
Nothing worked long term. I ended up back in the ER a couple more times. Trying the ER at Jefferson and again at Virtua, before we threw our hands up. It seemed like no one was listening. The drugs they were giving me weren't helping at all. I was still in bed 80% of everyday. My mother in law was here to help me with the girls so my husband could go into work.
My in laws have a doctor friend in New York. He suggested trying to get me an appointment with a headache specialist in NYC. He had an old friend that he could call. We jumped on the offer and I had an appointment within a week.
(more of my story to come later)
Wednesday, July 18, 2012
Diagnosis Day
Today I was diagnosed with Multiple Sclerosis.
I am a relatively healthy 29 year old women.
That is a lot to take in for one day.
Thank you to all our friends and families for helping us out so much this summer. Between taking the girls out, having play dates, watching them at the pool, and just showing them a little extra love when I can't be there. Special thanks to our summer Downs Farm Swim Family for all stepping up when we can't. The wonderful meals everyone has dropped off, has made this season bearable, and I thank you from the bottom of my heart. Most of all, I thank you for all the prayers. I truly can feel at peace now because of them. Please keep praying!
With all my love,
Haley
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