Beautiful, Glorious, Second Opinions

Finally, the day of the appointment with the MS specialist arrived.  Joe and I have gone to all of our appointments together and I've really appreciated the company since it's hard to think of all the questions to ask and remember all of the answers, plus, those of you who know me, know that someone forgot to give me a sense of direction at birth and when I try to find my way to new places, I sometimes end up in the wrong state.  Joe wasn't going to be able to go to this appointment because he had a shoot (like as in film, not drugs or guns :)  My mom offered to go with me to my appointment.  But on the way to the appointment, Joe called and told me to pick him up at work.  He had finished early and wanted to come with me.  So now I had a whole team with me!  We should have gotten matching shirts.

While we were waiting to be brought back to the exam room, a patient came out in a wheel chair.  That's not what you want to see when you're looking ahead at having MS.  You want to see a whole bunch of people with your disease that are doing great!  It's hard to imagine a wheel chair being a part of my future.  I felt out of place knowing that I had just come from three hours of fitness classes at my aerial studio.  First, we met with the physician's assistant.  She was very nice.  She got all of our information and did a whole bunch of strength and neurological tests on me.  I had to stand with my feet together and close my eyes.  I'm guessing they were testing my balance.  Then I had to resist when they would pull on my arms or legs.  They were trying to determine if my strength was even on both sides.

We waited a long time for Dr. Foley to come in.  It's never fun to wait for doctors but it's nice to know that when you get your turn, the doctor is going to take his time with you and answer all of your questions.  One of the first things Dr. Foley said was that this is a very unusual case.  He said it several times throughout our appointment, shaking his head, "Such an unusual case!"  I had made a list of questions to ask Dr. Foley about MS and MS treatments.  Well, I never got to ask those questions because, guess what?!  He says that we can't determine if it really is MS at this point!  He says that it could be Acute Disseminated Encephalomyelitis.  Say that five times fast!  The definition of ADEM from google is: Acute disseminated encephalomyelitis is a rare autoimmune disease marked by widespread attack of inflammation in the brain and spinal cord. ADEM typically damages myelin, causing destruction of white matter. It is often triggered following a viral infection or vaccination.  I mentioned that I had been looking into this possibility in one of my previous posts.  This is initially what made the most sense to me.  It's a one time infection that often occurs after a vaccination.  I told the doctor that I received a flu vaccine 18 days before symptoms occurred.  He said that is exactly right on time for ADEM occurring. We still can't know what it is for sure because clinically ADEM and MS are indistinguishable at first.  It will take more time to see if I develop more lesions or have more symptoms to know for sure.  I have an MRI scheduled in two months that is a 3T magnet MRI scan.  It is a lot more powerful than the MRIs I've already had.  It should give a clear picture of any lesions that may exist in my brain.  Hopefully, it won't detect a whole bunch more lesions.  That would burst my bubble.  

I know I shouldn't get my hopes up because it could still be MS, but this just feels like a replay of the whole Huntsman experience.  When they said maybe it's not cancer, and it wasn't!  That was the best!  It would be asking a lot to expect things to get easier again.  It's funny because at the beginning of all of this, Joe and I said we wanted to stop going to appointments because the news always got worse.  You have a tumor...it's cancerous grade 2...it's cancer grade 3.  But now it just keeps getting better and better.  It's not cancer... it's MS....maybe it's just a one time thing and will go away and never bother you again!

I mentioned before that I thought I was quite the escape artist, but now I'm starting to think that I just have straight up magical powers!  Sometimes I hear owls in my yard.  Maybe they're trying to deliver my acceptance letter to Hogwarts.

So, to be clear, Dr. Foley said it was too early to tell, but he is leaning toward thinking this is ADEM caused by flu vaccination.  He said not to get any more flu shots.  Apparently, it's not necessarily that the flu shot is dangerous for everyone, but for people who are predisposed to auto immune conditions.  But you never know if that's you or not.  I'm definitely done with flu shots.  I need to contact the company that made my flu shot and let them know what happened.  There is a fund that the vaccine company has to pay all of the people that experience side effects from their vaccines.  I'm not sure how I feel about that.  I don't love the idea of suing people.  I don't really know if it's their fault or not.  Sometimes companies like that are careless and they take unnecessary risks with people's lives in order to make money.  But I don't like to pass blame and I also view this experience overall as a positive one.  It has been challenging and quite a struggle but a lot of good has come of it also.  If I was paralyzed from surgery, I would be suing everyone I could, but so far, the outcome has been good and I don't want to be a gold digger.  It wouldn't hurt for them to cover my medical expenses and maybe a little extra for hair damages and cosmetic pain and suffering  ;) What do you think?

After I have my super charged MRI I will have a follow-up appointment with Dr. Foley to reassess the results.  That appointment is on May 27th.  We still may not know for sure at that time.  I want to thank everyone for their continued prayers in our behalf and clarify that I don't really attribute these miraculous circumstances to my magical powers.  I am so grateful to God for watching over me and my family and for occasionally answering our prayers just the way we want them.

Mia was just asking why all prayers aren't answered the way ours have been lately.  We talked about how this life wouldn't be a test and wouldn't stretch and grow our character if every time we had a problem, it was instantly solved as if we had a genie in a lamp.  I pointed out that she and her brother and sister have been fasting and praying for me to get pregnant for about four years to no avail.  Some things are God's will and some things aren't.  But it's all for the best and for our good. 

Speaking of infertility, my sister Maren and her husband Nate have decided to try to adopt a baby and would like to get the word out in case anyone knows of any birth mothers in that situation.  Keep them in mind.  Thanks!