Monday, December 28, 2009

An answer..8 years later!

Once again, I apologize for the lack of posts. The holidays have kept us very busy and I've been going through some medical issues that have kinda kept me from posting until I knew what "it" was.

In December of 2002 I woke up and couldn't move my wrists. I went to the ER where they told me I had tendinitis and sent me home with a referral to a orthopedic physician. A week later I woke up and couldn't move my ankle. I followed up there and they referred me to a rhumatologist. I had elevated ANA's and he began treating me for Lupus. I've went years taking up to 8 pills a day, getting cortisone shots and waking up many, many days in intense pain. The joint pain (and I do mean PAIN) jumped from joint to joint-I've limped to classes and winced in pain, but over the years I learned to manage the pain and eventually went off all medication. Once I got pregnant with Dominic I had seemed to go into remission and have had very few "flare up's" since.

December 2009: I started to feel that something was just not right. I was having trouble swallowing, had swollen glands and felt a weird "fluttering" behind my eyes. I just had a feeling that I HAD to get to a doctor and get a piece of mind. I went in and met with our new family physician and went over my symptoms. He ordered lots of blood work, a thyroid ultrasound and because of my family history with immune deficiency and the concerns I had with fluttering-ordered a brain MRI. I had the blood work done and scheduled my ultrasound and MRI.

A week later I went in for the Thyroid ultrasound first. 10 minutes later I was finished. I was then whisked in for the brain MRI. I had a cold at the time so she gave me a peppermint to suck on during the scan, but wasn't allowed to move my mouth--can I tell you how BADLY a mint stuck in one spot burns!?! LOL. About halfway through the scan the tech stopped it and told me she saw "something" and she needed to inject me with a special dye. I asked what she saw and she said she couldn't tell me. (Hello!! Insert panic!). It was at this moment I began to have a feeling that I knew what she had seen. We finished the scan and she told me that they'd have the results at the end of the week.

4 days later: I received a call from the doctor's office telling me that my results were in and I tested positive for Strep throat. *explains the swollen glands* She also told me that the doctor wanted to see me immediately. I thought that was strange-it's just strep? So I made the appointment to go in that afternoon. I knew something was up just by the way the doctor was fumbling his words. He looked nervous. First he told me I had strep and wrote a prescription for an antibiotic, then that the thyroid ultrasound revealed a small cyst that was really nothing of concern but we'd keep an eye on. Then he got to my brain MRI. He explained that the radiologist had seen many lesions on my right parietal lobe of my brain and that "given my age and family history" is indicative of Multiple Sclerosis. My mother has MS so I did know a bit about the disease. He told me he'd work with me to schedule an appointment at the Mellen Center, a part of the Cleveland Clinic that specializes in Multiple Sclerosis.

Today: Lou & I made our way at 9 am through the snow to Cleveland. Walking into the Mellen center was a bit scary. I saw people with many ranges of the disease-some in wheel chairs, many walking very wobbly and others who looked completely normal. I got a little panicked but Lou and I joked around and laughed a lot about funny apps we found on our Iphones. I got called in to see/meet my new neurologist and he did a bunch of tests and talked with us. He took a few minutes to look over my MRI and then came back in. He told me the same-that I had MS-the chance of me inheriting it being 3-5%, but he thinks we caught it early and it may be very mild. He also explained that he saw paleness on the nerves in the back of my eyes. Thanks to my brother, the med student, I learned that this is often one of the first symptoms of someone with MS. He ordered more blood work and a weird eye exam that I will have done in 2 weeks. I will then meet back with him on February 2nd, 2010 to discuss treatment options. The neurologist told me I will most likely be doing the same treatment as my mom-daily injections of a drug. It has worked well for her and I am hopeful that it will stop/slow the progression. So that's that.

So now to how I am feeling-knowing all this. I have to say, I feel relieved in some way. I wasn't crazy to know something was wrong. My intuition was correct. I finally have an answer after all these years-an explanation for everything I've gone through. I most likely do not/never had Lupus at all. It's been multiple sclerosis the entire time and now I can be correctly treated. I'm relieved and hopeful that we caught this early. I'm grateful for a great Family Physician who was proactive and took my concerns seriously! I'm thankful to have a supportive husband and a mother who will be able to help and understand me like no one else on this planet can because she's going through the same thing.

Lou, Dominic & I will be walking the MS Walk again this year as the team "Daly Miracles" but this year, we'll be walking for my mom and for me. I'll have updates soon once I register our team.


Joy said...

Although I can't say I know how you feel, but I have a pretty good idea...I spent the better part of 3 years with numbness on the left side of my body which all the doctors said was a pinched nerve...but about 3 years later i was having brain surgery...oddly enough I felt relief too! Hang in there :)

EEMorris said...

Look..the 2 Headley girls are the first to let you know that we are thinking about you! I'm so glad that you now have the piece of mind to know what's going on. And what a relief to know that you, your mom, and brother are working to learn more and supporting to find a cure. We love you are such a strong, amazing person!

Taylor @ Jimmy Choos and a Baby Too said...

Oh my gosh girl you are in my prayers---Im so glad they figured it out for you! My drs. have been saying they thought I had MS for years but now they say its Lupus and Crohns...thats so crazy that yours were saying lupus and now MS!

Justin and Jessica said...

I am glad that you were able to get some answers. Having never met you in real-life, I learned a lot about you in this post - Your positive attitude about all of this definitely says a lot about your character! :)

We will keep you in our prayers!

Nick, Jen + Hannah said...

Brooke, I'm so glad you finally have answers after so many years! You seem like a strong person and will be able to tackle this disease! I'm sure you're loving family will keep you strong! I will definitely keep you in my thoughts!

Nicole and Jared said...

We will always be here to support you. I know we aren't always close, but if there is anything you ever need, we are just a phone call away. Keep your head up. We love you guys!!!

Jessica said...

Wow Brooke! I'm so glad you got to the bottom of this issue. I know it has been an on-going thing for you and you were able to get more answers.
I will be praying for you and your doctors that they can get you on the right treatment to keep it mild and stop the flare ups. XOXO

TheKruppParents said...


Wow. I am so very sorry to hear all of this, but please know that you and your Mom are in my prayers. I love that you are keeping your head up and staying positive. That will take you everywhere. You are and always have been an extremely strong woman and I know you'll overcome this the way you have overcome countless other obstacles. Please know that I am here for you if you need me.

We love you, Brooke!!!

- Lavender and the Krupp family

Lyndsay said...

Wow, you will be in my thoughts. {{hugs}}

E said...

I'm in awe of your strength and positive attitude. You will be in my daily prayers. I'm so glad they caught it early.