my health

I have had a kinda crazy health history....In high school I used to be thin/average weight, in good shape and in pretty good health. When i was 16/17/18 I started getting sick more often. Gained weight very quickly as well, due to a sensitivity to steroids as well as hypothyroid. When I was 18 and still in high school, my ulnar nerves in my arm('funny bone') started not working so well. I would drop things (like my bow), I would get shooting nerve pain, then pins and needles, then numbness. When I was 18 in college I got strep throat/tonsilitis. I was on antibiotics for almost 8 months straight, until I got surgery in June of 2004 to remove my tonsils and part of my throat. (Had to get rid of the infection somehow if CIPRO wasn't working...) That experience was seriously on par with childbirth (I can't actually say that now!). My mental state went completely down hill...I was sick all the time. I stopped school...started living between my moms house and my then boyfriends apartment in new york city still...and got some much needed mental care. Got working out every day, which made me feel a whole lot better....and I made the choice to move back to New York City and take some classes. I ended up back in music school again, and did pretty well that year. I, of course, got sick more often than most people, but I made it through. I was engaged by the end of that school year, and we moved down to North Carolina. I had auditioned and gotten in to a cheaper school, only to find out I needed to take 5 more classes at a community college to really transfer. (difference in requirements between conservatory, and a state school with a music program). I finished about a month of school there, until I started getting really sick. My breathing was terrible. I kept getting broncitis, and then developed pneumonia. My oxygen levels were low, and I ended up in the hospital. I started getting rashes a lot, that would turn into a staph infection before I even moved to North Carolina...but they were very localized. Now, they seemed to be taking up more of my body. About the third time in a nearly a year, I was admitted to the hospital again for breathing, to shock the medical staff that at that point, I had lost nearly all of the first layer of my skin on my body (except half of my face). I ended up getting an awesome dermatologist, and got a diagnosis of pserioform atopic dermatitis with eosinophils. Eosinophils, are a type of white blood cell that combats allergies. The answer to lowering this number of white blood cell in my body and getting my skin back? Oral chemotherapy medicine. I was so tired all of the time. About 3/4 of my hair fell out...and what was left was so thin I cut it...and it stopped growing. My teeth got HORRIBLE. Falling apart. My eyes were sunken in and I looked tired all of the time. I started this medicine in 2007. In February of 2009, I stopped this medicine...I was sick of it. Slowly I started to feel a little bit better. A little bit more energy. In July I was pregnant with Cole. In August, I saw a show called mystery diagnosis, on discovery health channel. I saw a woman, who kept getting sick all of the time. Infection after infection. She started having nerve problems. She got a rash on her entire body. She kept getting pneumonia. They found out, she had a high amount of eosinophils in a lung bioposy. She was diagnosed with a condition, called Churg-Strauss.

http://www.cssassociation.org/about_the_syndrome.asp

Just looking at the list of symptoms...I have about enough already, that would give me this diagnosis. But, other tests, could not be done during pregnancy.

During my pregnancy, I was hospitilized once for breathing issues. Besides that, I went nearly 9 months without having an infection. I never knew that was possible. My eosinophil levels were in normal range. Pregnancy is amazing when it comes to issues like this. Its classic for auto immune issues to go into remission when you are pregnant. Within two months of giving birth, I had already been on 4 rounds of antibiotics (2 rounds for tooth infections, and got 2 pulled, one for broncitis and one for pneumonia), 2 rounds of steroids for breathing, (and I am very sensitive to steroids). Just yesterday, I started on my 5th round of antibiotics since Cole was born, for what again? Broncitis. And, another round of steroids (and, due to my sensitivity, have already gained 6 pounds...the swelling hurts...but it dramatically helps my breathing).

I saw a pulmonary doctor for the first time up here at the very end of July. I told him, that I did not have a diagnosis of churg-strauss syndrome, but it was something I was trying to work on getting a diagnosis of with my primary care doctor (I just want a yes or no...something has been going on for years...and I just want to know WHAT it is). He gave me yet another inhaled steroid to try (lasted 2 and a half days til the symptoms i knew i couldn't put up with forever), and did some more allergy blood work. Found out I am really really really allergic to dogs...doesn't help when I'm with 4 of em. I saw him again on the 13th, and I am a candidate for a new drug called Xolair. It works directly to attack the IgE levels in the blood...the levels that respond to certain allergins like dogs, cats, dust, mold...all of that stuff. He has had a lot of success with this drug, but it does come with some serious possible side effects. For example, I will be required to carry an epi pen around with me at all times. I could go into shock. I need to get this shot every two weeks, and can only do it in a doctors office. When I move and don't have animals, I can go to every month.

I was doing some more reading about it, and found out that it has a .5% chance of causing cancer. Lovely.
And then I see something that is kind of shocking on the Xolair website, in the perscribing info...having to do with this little known churg strauss syndrome of all things...

"5.5 Eosinophilic Conditions
In rare cases, patients with asthma on therapy with Xolair may present with serious systemic eosinophilia sometimes presenting with clinical features of vasculitis consistent with Churg-Strauss syndrome, a condition which is often treated with systemic corticosteroid therapy. These events usually, but not always, have been associated with the reduction of oral corticosteroid therapy. Physicians should be alert to eosinophilia, vasculitic rash, worsening
pulmonary symptoms, cardiac complications, and/or neuropathy presenting in their patients. A causal association between Xolair and these underlying conditions has not been established."

So, I might have Churg-Strauss, or something very close to it...but if I don't...I could just take this medicine and get it anyways. Hm. It doesn't say anything about the safety of this medicine if I DO have this though. Churg-Strauss is grim enough, without having to make it WORSE. (In the most recent study on life expectancy, only half of the people in the study lived past 10 years after diagnosis..problem being that the eosinophils attack the entire body, including major organs, thinking its something your body is allergic to. You are literally allergic to yourself)

I just want to know whats going on here. By now, I don't have any feeling from my elbows down into my hands on one side of my arm, and don't feel my pinky finger or half of my ring finger. I have muscle degeneration already on my right hand. I was told, that if I don't get surgery to move the nerve into the inside of my arm, I won't have enough dexterity to continue to be a musician in 10 years. I also started getting neuropathy in my legs, and got an MRI a few months back that I find out about on Friday.
I have lymphdonopathy...which is a fancy way of saying enlarged lymph nodes...that stay large.
My eosinophil count in my blood is already double 'normal' levels again...and the rash is started to show itself again on my right hand and on my head. I don't know what my level is on my skin now.
Still, I am having infection after infection after infection...and more serious breathing issues than I ever had growing up with asthma. I have gotten pneumonia way too many times in my life.
I have had heart issues, that seemed to get better while on the oral chemotherapy, most notably, pitted edema in my legs. Pitting edema is most commonly caused by two things. Either a) high sodium level (mine has actually been low or low normal every single blood test I have gotten) and b) a heart valve issue (I have a slight mitral valve prolapse, but nothing that could cause edema. A less common answer for it, is a vasculitis condition, which churg-strauss is.
All of these, are symptoms of Churg-Strauss syndrome. I just have not found anyone to put together the pieces yet. And now, I am freaking out, because I really want to breath. I cannot remember the last time I didn't wheeze...or was able to take a full breath.

All of these things, are going to effect Cole. I need to make my decisions with him in mind. He needs a mama who can breath...so I can play outside with him. He needs a mom who isn't sick all of the time. I need to figure this whole thing out...and its still just some huge waiting game...with doctors not really communicating with each other.