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.
Sunday, July 22, 2012
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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