Welcome

Welcome

I'm a redeemed child of God and the momma to four vivacious daughters. I'm passionate about finding hidden blessings in the trials of life, living it out in an honest and open way, while encouraging those around me to believe in better.

3
Jul

finally!! a diagnosis. sort of.

So … it’s been a long morning!  I met with my new doctor this morning.  Actually, I spent about 5 minutes with him and 30 with his associate.  I liked them both.  CJ was super impressed with the new guy {Dr. K}.  He was quick.  To the point.  Confident in what he was saying.

I brought in my two inch thick file, complete with my digital MRI files.  They looked at them.  They examined me.  The associate first, then Dr. K.

I’m saying it like this … for all intents & purposes, I have MS … but I’ve been officially diagnosed with Clinically Isolated Syndrome {CIS}.  It’s sort of a precursor to MS.  I won’t post all the info, but there’s some good understanding of it on the link.  {and as you’ll read below, I definitely have 2 brain lesions …}

We asked about a spinal tap.  He didn’t really want to do one.  He said it wouldn’t change his thoughts on my diagnosis or treatment.  With MS, you need to be aggressive.  Each episode you have, leaves you with further permanent damage {i.e., permanent vision loss}.  MS isn’t a wait & see disorder … too much damage can be done if you ‘wait & see.’  Hey, I can appreciate that!

So I’ll be starting a Betaseron therapy right away.  It’s an every-other-day injection that I’ll give myself.  This treatment boasts the thinnest needle in MS therapy … again, I’m down with that!  A nurse will be coming to the house to teach me how to give the injections … he described it much like a pen.

Anyway.

Dr. K agrees with Dr. Traci … my MRI was abnormal.  I currently have two small brain lesions … one larger than the other.  So we’ll keep an eye on those and continue with occasional MRI’s to make sure more lesions aren’t developing.  I asked him about the other doctor’s diagnosis of small fiber neuropathy, and while he thinks some of the symptoms can seem similar … with the optic neuritis that started this all, MS is much more likely.  He actually didn’t doubt it.  He’s confident in his diagnosis.  And frankly, with the research and reading that I’ve done … I’d have to agree.

As far as the symptoms I’m currently experiencing and whether those will go away with this treatment … he can’t say.  All he can say is that the treatment will get my immune system as back to normal as it can so that it will definitely delay and hopefully prevent any further onset of symptoms and progression.  The hope then, is that once my system is back to normal, the current symptoms will subside.

The side effects of the treatment are flu-like symptoms {which I’m suppose to get use to} and possible liver problems {and I’ll be monitored regularly for that}.

Big sigh …

I feel such relief at an answer … but … the question I’m having now … and of course now that I’m gone from my appointment … is, if this is CIS, when does an MS diagnosis come?

In order to get a message to the doctor, I have to leave a message with the triage nurse.  She talks to the doctor and then the nurse calls me back with an answer.  I’ve talked to the nurse twice so far and am waiting for another call that she says may not come ’til Monday.  Boo!

Dr. K’s answer to my first question:  an MS diagnosis comes when you have separate isolated incidences.  {So the optic neuritis and one faulty MRI were the first incident.}  Then months later {maybe 6}, you have another MRI with further progression or more symptoms.  I explained to the nurse, that’s basically what has happened.  My new symptoms started in May, with the second MRI {done in June} showing further progression.

Blagh!  Part of the problem is … we saw Dr. K for only 5 or so minutes.  We spent the majority of our visit with his associate.  They both looked at my MRI’s and the various reports I had … but I didn’t talk to Dr. K about my history since the optic neuritis.  So now i’m wondering if didn’t really know, or see the whole history?  I don’t know.

And I suppose it doesn’t matter.  I’ll be starting the treatment, so it will help any further progression.  I guess I just feel uneasy with the diagnosis … I mean … I feel GREAT with some kind of diagnosis … but I feel like I still don’t understand it all.

Alrighty.  That’s all I know for now.  I’ll be sure to let you know when/if I find out more.

Thank you, thank you for your prayers, thoughts, emails, texts & phone calls.  Overall, I’m feeling peace around the whole situation.  I’ve had a tiny breakdown here and there, but I feel it’s more of still feeling like I don’t have a full answer or picture.

But then … I guess that’s why I need to remember this and this!  :)

I think what I’m most looking forward to and praying for, is to be symptom free.  It was interesting … I promise, I really, really don’t complain about my symptoms!  If I’m having a particularly hard time or day, I’ll let CJ know … “things are bad today.”  But I don’t really continually complain about it.  But it was interesting at my appointment, to hear him say to the doctor that my symptoms are becoming debilitating.  They are.  I’ve not said it and I continue to push through it … but at times they have been a lot to take.

So … anyway.  I’ll let you know if I find out more and I’ll keep you posted on how I continue to feel.

Thank you blogosphere for your love!  ;)

WOO!  Just got a call from the good Doc himself! :)  Okay … I feel MUCH better … he explained, he believes I am in the process of developing MS.  My current symptoms, lesions, and history of optic neuritis are absolutely in line for developing MS, which is why he wants me to start the treatment right away.  The lesions I have at this point, are not enough {quanitity} to qualify as an MS diagnosis.

As I mentioned, I’ll continue to be monitored with MRI’s, but the hope with this treatment is that no further progression will occur.  And as far as eliminating my symptoms … the treatment may or may not get rid of them.  There are MS patients all over the world that live with their symptoms.

Sigh … I’m not sure that’s what the Lord has planned for me … so I’m putting my trust in him!

OH!  And P.S. while CJ and I were at my appointment this morning, Granny worked with the girls all morning and they are bike riding maniacs!!!

Trust … it’s a good thing!  :)

Sorry for this long rambling … lots to say … hope it makes sense!  Now I’m off to get miss teenager from camp … man, I’ve missed her!

Related Posts Plugin for WordPress, Blogger...

Posted in eye update, multiple sclerosis

 

Leave a Reply

share your last post?

Categories