My Share of Diseases

When I first received the multiple sclerosis diagnosis, I was having a really hard time feeling convinced that that was really it.  It's just so hard to believe you have a degenerative disease when you are functioning at 100%.  I was convinced that it was a condition called ADEM or Acute Disseminated Encephalomyelitis which is basically the condition that is the "virus theory" we were all hoping for.  When I read about this condition, it said that it could be caused by a virus or immunization.  I received a flu vaccine 18 days before I noticed the slurred speech, which is within the window of how long it takes for ADEM to occur.  I thought, "Surely, I would have more symptoms than this if I had MS!"  I wrote to my doctor and asked him about this possibility.  He said that actually MS can also be triggered by vaccines.  He said it is possible that I could have a mild case of ADEM (usually people with this condition have very severe symptoms and sometimes coma) but it goes away completely.  But there is no way to distinguish between the two diseases other than to wait and see if it comes back.  Then I googled asymptomatic multiple sclerosis and learned that there are some people that have no symptoms at all but find out they have MS through MRI's they had for other reasons.  These people typically develop symptoms within 5 years.  So once I read that, I started believing that maybe I really do have it.  It's probably just another blessing that I have discovered it so early on so that I can start applying dietary changes and supplementation that could help me avoid degeneration.  Because, of course, I will!  We all know what an escape artist I am! ;)

I had another MRI on Thursday.  This one was of my neck and cervical spine.  It was the worst one yet by far!  It lasted about an hour and a half! Such a long time for a fidgeter like me!  It was a constant struggle between wanting to follow the rules and not get scolded by the MRI tech and desperately wanting to shift my position a little to get comfortable. 

They did this MRI to see if there were any more MS lesions on my spine that would make diagnosis more clear.  There weren't any, which is what they expected, but they did find arthritis in my spine.  More arthritis than my doctor said he would expect to see in someone my age.  Well, that wasn't a huge shocker because I have had pretty bad back pain for the last two years or so and suspected it could be arthritis since it seemed to get worse in cold weather.  So now I have spinal osteoarthritis and multiple sclerosis!  How many degenerative diseases does one girl need?!  I think I'm going to call a truce with my doctors and tell them to keep any future diagnoses to themselves.  You know, a don't ask, don't tell policy.  I think I've had my share, thank you!  These conditions aren't great, but, don't worry, I haven't forgotten how blessed I am to not have cancer.  At least I HOPE I'm not going to get news back from Stanford saying, actually you DO have cancer!  That's the worst thing I could imagine right now.  Ever since we heard it wasn't, we've been partying like it's 1999, and going back to cancer again would be so devastating.  But, the good news is, if the spinal fluid results confirm the MS suspicion that the doctors at Huntsman had, then that pretty much seals the deal, right?  If it's MS, it can't be cancer!

Thank you to all those who heeded the call to pray for me to have MS!  It worked!  And what a blessing it is!  I am finally off of my horrid steroid medication that I had to take after surgery.  I'm hoping the puffiness in my face will quickly subside now that I'm off of it.  I also got to go back to my workout studio.  I did my first strength workout on Thursday.  It felt so good to do something challenging and strengthening like that!  I went again on Saturday and now I am enjoying the feeling of sore muscles.  I'm really pleased that, though I've definitely lost strength, it didn't feel like it was the first time I'd ever worked out, which it sometimes can after a break.

My mind is totally flooded with information right now.  I'm reading and researching all day long. And now, I have to add arthritis onto the list of conditions to heal.  In addition to the recent stuff that has been going on, I have been dealing with some kind of hormonal condition for about seven years, ever since Elyse was born.  I have not been able to get pregnant ever since then and I also have been unable to lose any weight under any circumstances.  When this whole thing started, I was hoping that it was all connected somehow so that we could treat it all at once, but my doctors don't seem to think there's any relation.  My Dad doctor, however, thinks that it is highly likely that it could be related considering that my brain lesion is very near to the pituitary gland and hypothalamus which are responsible for fertility and metabolism.  I may never know for sure, I just wish I didn't have to research 75 different conditions in the search to heal whatever the heck is going on with my body.  I'm 35 years old!  Why am I breaking down?!  And to those of you who are wondering, yes, I have been down the roads of thyroid, bioidentical hormones, and PCOS.  Still no answers.

I'm confident that I will find the answers and solutions I need.  That will be my new journey.  So glad I'm not starting my third week of chemo/radiation right now and that my hair is starting to grow back instead of starting to fall out!  I have a whole half an inch right now!

I have, however, just realized that this huge scar down the middle of my head is always going to show and mess with my hairline and fringe even when my hair grows back.  And I'm also getting sick of wearing hats.  If you think it's hard to find a flattering outfit to wear every morning, try finding the outfit AND a hat that matches it!  Small price, I know.

My speech is so much better now!  And I feel like I've gotten most of my expressiveness back.  That's good news, because that made me feel really awkward.  I still have to concentrate a little when I sing to hit the notes.  I expect to be completely back to my old self by the first of March.  That's amazing considering that I could be relearning to walk and feed myself right now.

When Joseph was younger, he wasn't progressing with reading as quickly as I wanted him to.  It wasn't until I started having him read aloud from the scriptures every day that he finally got it and took off with reading.  Because of this experience, I started Elyse right away reading out of the scriptures and she has been the quickest of all my children to learn to read fluently.  And you can tell from the picture above that she loves the scriptures, too :)  When I was having trouble speaking, I thought about this and thought, "The answer is to read the scriptures aloud."  There is so much power in the scriptures.  There isn't a problem that can't be improved by reading the scriptures. President Ezra Taft Benson once said, “It is not just that the Book of Mormon bears testimony of Christ, though it indeed does that, too. But there is something more. There is a power in the book which will begin to flow into your lives the moment you begin a serious study of the book."  I have found that to be true in my life.  I'll report back to let you know how my scripture reading "therapy" works out.  It's working great so far!  If I'm successful, they'll probably start implementing this therapy in all the major clinics. ;)

The Cool People's Club

Over the weekend, I noticed that I had several messages on my answering machine that I had not checked.  One was from the neurologist's office that we had an appointment with in APRIL saying that they had a cancellation for Monday (today)!  Of course, I got the message over the weekend when it was too late to call and snag that appointment, but Joe worked his magic and managed to get me that appointment somehow.  He has the "I'm not afraid to be an obnoxious patient and ask for favors" gene that I don't have.  He gets a lot more done than I do because of that.  He talked to the after hours nurse and got her to send a message to the scheduling receptionist to call us first thing in the morning to set up the appointment.  I was waiting until the office opened to call and see if I could set up the appintment, but an hour before they even opened, Joe called and told me he had made an appointment for 11:00 am.  He left work to come to the appointment with me.  That is a relief, because it is so hard to hear all of the medical language the doctors use and remember it accurately without somebody to back you up.  He also thinks of questions I don't think to ask.  I'm so glad I have someone to go through this with.

I'm so happy to finally have had this appointment.  It felt like we would never hear the results of the lumbar puncture.  For some reason, neurologists are booked out  months in advance.  That makes no sense to me!  How do you have patients with all kinds of neurological conditions and not have available appointments for 2 months or more?!  That seems crazy to me.  It's sad that there are so many patients that need to see the neurologist.  I'm thinking of getting Joseph on the path to become a neurologist since they seem to be in such high demand.

Apparently, there is no one test that can conclusively determine if you have MS or if you do not have MS.  Based on my spinal fluid test results, the neurologist said that two out of three markers point in the direction of MS and, for now, he is going to assume that I do have MS.  However, since I feel so healthy and have so few symptoms, he does not want to start any treatment for the time being. 

Ever since we have received the "it's not cancer" news, I have not even been thinking very much about what I actually do have.  I've just been thinking that I feel so healthy and that I must not really have anything wrong with me.  I thought it would be a big adjustment to find out that there actually is something wrong. But after the doctor said he thought it was MS, I didn't feel a whole lot.  After you think you're going to die without raising your children, it takes a lot to shake you, I guess.  Emotionally, I feel hopeful about this diagnosis.  But, at this point, I'm really uneducated about it and I really haven't had any real symptoms.  Actually, I'm not even totally convinced that I do have it!  I still think it's possible that I'll never have any more symptoms or attacks and we'll look back and wonder what this whole thing was about!  That would be nice.

Recently, David and Valerie Osmond have moved into our ward and we've started getting to know them.  They are such a sweet couple!  David has MS.  We spoke to him about it a little at church the other day and he is going to be such a great resource!  He has all the info and all the connections!  Once again, the Lord is watching out for us and making sure we get the best of everything.  David said that finding out it was MS would almost be good news because the treatments these days are so good and people lead such normal lives.  Plus, he said I could be in the "cool people's club" with him!  Honestly, I would have rather been in the "disease free club"  but the "cool people's MS club" sounds a lot better than the "terminal cancer club!"  So no complaints here!

We asked the doctor about other possible diseases.  I've been looking up demyelinating diseases and scaring myself ever since we got the pathology results.  But, apparently, MS is one of the few demyelinating diseases that shows up as lesions on the brain.  So it's definitely not ALS!  That is the best news of all!  When we were speaking to David Osmond, he mentioned that he had lesions all over his brain and spine.  That made me think that they had never done an MRI of anything but my brain and one of the signs of "multiple" sclerosis is "multiple" lesions.  I asked the doctor about that and he said the next step is to get an MRI of my neck and spine to check for more lesions.  That will be this coming Thursday.  He doesn't suspect that there will be any more lesions because lesions of the spine usually produce a lot of symptoms and I have virtually none.  Then, in a month and a half, I will have a follow up brain MRI to see if the lesion has reduced.  If it has that will indicate MS.  MS lesions usually flare up and then resolve, leaving behind permanent scars.

Looks like there is still a long road ahead of me, with "long" being the operative word.  Yay! Long!  I love that word.  A long road is fine if it means a long life, a long time with my kids, and let's not forget, long hair!  Whatever twists and turns there are on this long road, I'm certain there will continue to be miracles around every corner!