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!