One year follow up from dx-thank you

[jujuminx]

I was dx w RRMS last year August 2010.  In that time I have gone back to my neuro three times for follow up's and my GP twice for my annual and a follow up on bloodwork.

Making my most recent appt with my neuro last week was the hardest b/c I knew he wanted to do more brain and spinal MRI's to check the effectiveness of the copaxone I am on. Any more lesions? Any new ones?  This terrified me, not only the prospect of it coming back not the way I wanted but the MRI itself.  Two hours in that tube is my idea of pure torture.

My GP was able to include blood panels and D level testing my neuro wanted along with her own so I only had to go into the blood lab once for the both of them (yeah). My inoffice visit with my neuro went well. I am tested competely normal and my blood panel was normal along with my D levels (I am currently taking 5000 IU daily).

My neuro told me that although damage can be done by MS w/o symtoms that is actually less likely when you are talking about spinal lesions. Most active spinal lesions will cause symptoms he said. This made me feel better as I have no current sx. Idk though there was alittle voice in the back of my head saying, what if the copaxone isn't working, what if I have more lesions, active lesions...what next?  A diff dmd? Dealing with a new shot routine?  What if the next dmd is horrible and doesn't work? Blah, blah, blah.

I went to have my MRI early this morning. Valium in hand and convinced if I was going to have a relapse it would be due to the stress of the MRI and all that came with it.  Although I took my first pill before I left the house this morning and my second in the waiting room, it really didn't kick in very quickly.  Oh my gosh, it was all I could do not to tell the tech to pull me out of that damn tube and forget it.

About that time I thought of you all guys and all that we all have collectively gone through with this disease. The fear, the pain, the sleepless night, the not knowing our futures, the effects on our lives, and those of you who are facing daily chronic pain and some disability due to this terrible disease.  So, I battled through my anxiety and two hours later the MRI's were done.

I just got a call from the neuro and I have no active lesions and no new ones since my last MRI last year. He wants me to stay on the copaxone.  Thank you all for being there for me this last year and for sharing your lives with me.  Some days the forum is full of heart tugging stories of people struggling w this disease I wanted to share one that maybe will offer others hope.

Thank you all for being with me this last year. It's a journey I never wanted to be on but you all have made it such that I know that this is exactly where I am suppose to be.

Blessings, Julie

[jen673]

Thanks for the inspirational update!  

Your posts over the last year have helped me tremendously - THANK YOU!

I too am on Copaxone and my first anniversary will be this April.  I am soooo happy for that it seems to be doing its job and pray that I will be sending a similar update as yours in April of 2012!  

Jeny

[MonkeyMom4]

Hey Julie,

Glad you made it through the MRI and no new lesions!!! Yippy!!

I'm sorry you are on this journey and I hope the meds continue to work for you.

Thanks for updating all of us, wish you all the best.

-Kelly

[jujuminx]

Thanks guys!  

As I tried to explain to my friends and family, checking the progress, or lack of progression in MS is difficult and not something you can just take a blood test for...it takes time.

The only way we know if a dmd is working or not is relapses and lesion load.  I feel so lucky that for now I have stablized and my neuro doesn't have to consider perhaps trying another drug.

I have to admit the first year after dx su cks. You just don't feel like your life is normal anymore. There is consistent worry about the new routine you are following..dmd's everyday, staying out of the heat, avoiding being overly stressed, saying no to things that before you wouldnt' have even thought about.  

And underlying all of it is the worry if any of it is even working, some of this worry is recognizable and some is not so obvious.  While I don't look forward to my daily shots, for now at least I am looking at them differently.

I pray for you all daily and I am so grateful for each and everyone of you!

Julie

[Needhelp16]

So glad to hear copaxone is working for you, and thanks for the positive post.  I can only hope and pray that my experience with copaxone will be like yours after the first year!

Laura

[Sparkysarah]

I  identified with your post and it is amazing how fast time flies. I was also diagnosed last year in March and so it is now 18 months for me and yet it still feels fairly new.

I hated injections and MRI scans but have had to get used to them (as I am on a drug trial) and somehow we learn to overcome our fears. So well done to you for all that you have achieved during the last year. I was rather concerned that your neuro wanted to look at your brain scan to look for changes in your lesions and the implication was that the result may have affected whether he recommended you staying on Copaxone. So I am glad that you are staying on the DMD and hope that this continues.

Anyhow thanks for your positive post Julie and good luck for the next year. I think it is a learning curve for us all having MS and although we can learn from each other, we have to find our own coping mechanisms to deal with our individual circumstances and manifestation of MS.

Best wishes

Sarah x

[sllowe]

Julie - what an inspirational post. I'm so proud of you :)
Thank you for sharing your journey before, during, and after recent uncertainty, disease progression, unknowns, etc..
Thank you,
-Shell

[jujuminx]

Thank you Lulu and Alex.  There is always good in the bad and you guys are the good.

So many times we find ourselves on a path we didn't expect and we are left wondering why.  This forum has helped me so much and I know it is one of the many things that has helped me embrace this unexpected path.

Who knows what next year will bring? But I know that no matter what, I have this place to come and share my pain, grief, anxiousness and joy.

Julie

[tingletingle]

Hi Julie,
That is the nicest anniversary present and a great story for us all to read. I'll bet you are just so relieved.

If there is one great learning from being diagnosed it is for me about relationships. I am finding now that I am so much more aware of what everyone is going through and as a result it has brought me closer to people.

I love the fact that you recognise this forum as a significant crutch for you in your time of need. I too feel that this place is so important for our mental health. It is a place we can band together and lift each other up.

Thank you for sharing your milestone with us. I hope my anniversary is just as positive.

Blessings
Alex

[Lulu54]

Julie, this is the club that no one wants to be a member of, but still feels pretty good to belong to at the end of the day. I'm so glad you have found this place useful.  

.For what it's worth, it does get easier, for most of us  I just passed my 3 year anniversary from my dx over the weekend, and I didn't think of that until today. It gets easier living with the MonSter in the corner.

hugs,"
Lulu