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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!

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Posted in eye update, multiple sclerosis

 

12 Responses to “finally!! a diagnosis. sort of.”

  1. Leslie says:

    Well, I’m certainly glad that you finally have a diagnosis! I hope and pray that the treatments do wonders for you. The marvels of medicine plus the prayers being said for you have got to amount to something big!! I have faith. :) Many hugs for you . . .

  2. Marta says:

    Tracie – I am so happy that you finally have some answers. I wish you didn’t have to go through this at all but am happy that you can at least begin to treat it and stop it and eliminate the symptoms. Know that we are all here for you as you go through this. Love you!

  3. Tiffany says:

    So glad that you have an solid answer to all of this & that you are starting treatment right away. We will all be praying that it will give you relief from your symptoms. We are all here for you in whatever way you need us & that includes listening to you “complain” about how you are feeling. We love you!

  4. LobotoME says:

    hi tracie & cj – so glad you finally got some answers and while i wish you didn’t have to go through any of this i know you will make it through just fine… please let me know if there is anything i can do. we will keep you in our thoughts and prayers.

    xo, jenny

  5. cyndi says:

    You have such a positive attitude! My heart (and prayers) go out to you as you face this challenging road. I hope the treatment does everything it’s supposed to do (minus the side effects) and you’re feeling better in no time. Your faith is such an inspiration and I know it will carry you through.

  6. Terry says:

    I know how relieved you are to finally just have an diagnosis…that it isn’t all in your head. You give me hope and as we travel along on your journey we will give you all the love and support that you need.

  7. Brigitte Short says:

    Finally you’re getting some answers…a diagnosis that you are “comfortable” with…and that makes sense, right?
    Will keep on praying for you/with you to be symptoms free, to give you strength and courage. Family, Friends and God will be beside you thru this journey. We love you, Tracie. You’re in my thoughts and prayers.xoxo

  8. Jeannie says:

    Sending lots of good thoughts your way. I’m glad you have some answers now.

  9. Amy says:

    I am so happy that you finally have a direction in all of this. Keep trusting in the Lord and stay strong. You are amazing. Whatever help you need at any point, you know we are ALL here for you. You are deeply loved by many.

  10. Rachel says:

    I hope the Betaseron therapy works for you! …it’s comforting to know that there’s SOOO much more known about MS than when my mom was diagnosed 20 years ago. it keeps me hopeful for both of your futures! :-)

  11. Kelli says:

    Tracie,
    I must say it is a relief that you have a diagnosis and you can face this head on. You seem to be handling this in an amazingly brave fashion. That takes so much strength and you seem to be displaying this strength beautifully. My sister actually works for a division of Merck Germany here in the states.. EMD Serono. She actually manages the study they are working on involving optic neuritis and MS..They are handling patients with early onset ON and currently are in the middle of a clinical trial involving this. She is a great resource if you need one. If you haven’t already looked you can check out clinicaltrials.gov and search for clinical trials in the area of ms and early onset ms. She also works throughout the country with many different doctors who are involved in these studies as well. Let me know if I can help! My thoughts and prayers are with you…!Kelli

  12. terrie says:

    tracie…

    i know you have God’s peace with you…. but I am still praying for you. we are having dinner with cindy and sonny and sonny has had ms for 30 years. i have asked a ton and learned a ton this vacation. we can talk when i get back next monday!!

    terrie

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