This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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Update

Last Monday I went to Seattle to see a few of my doctors. For the most part everything went well. The trip itself was not the greatest as I did not feel well. Fortunately though my dad drove and so it was okay.

The gist of it is that they are not really sure what is going on with my liver and pancreas. My levels continue to fluctuate. As of Monday they were still elevated. My GI doc is questioning if there is possibly a stone or cyst or tumor that is blocking the ducts. He wants to go in and do a procedure to see if he can figure out more about what is happening. So, back to Seattle I will go on April 1st. The procedure will be done on the 2nd, but I have to do all the prep stuff the day before so we will be going on the 1st.

I also saw my neurologist. She was very pleased with how I am doing. She said that considering all that has gone on with my health over the last few months, I am doing really well MS wise. I had been questioning how well I am responding to the Novantrone because over the last few months I have had an increase in MS symptoms, however she explained that anytime you are sick your MS will respond on some level. Seeing how sick I have been over the last few months, the level of MS symptoms that I have had is not that bad. She assured me that had I not been on the Novantrone and/or if the Novantrone was no longer working for me it would have been much worse. I was very happy to hear that. I am getting close to the point where they want you to stop the Novantrone though (dose wise) and so she is going to have me take 2 more doses (April & July) and then do another MRI in August. From there we will decide what the next step is. I will let you know when I do! :) Take care.

7 comments:

mdmhvonpa said...

They cant look inside without opening you up!? MRI,CATScan, XRay ... nothing?

Jaime said...

Hi Mdmhvonpa,

They already did all of the other tests....CT, X-rays, etc. Problem is that it was not conclusive of what is going on. Fortunately the procedure they are doing does not require opening me up, even though it may require some biopsies, etc. They are going to go in through endoscopy. It's not the typical endoscopy, a bit more complicated, but it is still through endoscopy, so that is good! :)

I hope that you are doing well. Take care of yourself.

Jaime

Vivian said...

Jaime,

You continue to inspire me. I have tagged you over at my blog for the latest meme. I hope you play because I would love to hear what your 6 word memoir would say. =) The rules are posted on my blog. Big hugs and keep believing.

Vivian

Diane J Standiford said...

I am very interested in this Novontrone. MS is such a mystery--I have had ovarian cancer (Ms didn't get worse) and I get usual stuff, my MS not affected, I take copaxone, sporadically, I haven't heard of anyone yet on Novantrone who is symptom free or remains good after going off. I hope they figure out your other issue; I had a liver biopsy due to raised liver enzymes and it showed NOTHING, a year later a large uterine fibroid tumor hysterectomy took care of the enzyme issue.

Jaime said...

Hi Vivian,

I will come and take a look. I have never done any of those. It will probably be a day or two until I can get to it. I will let you know once I have done it!

Thanks for sharing.

Jaime

Jaime said...

Hi Diane,

For me it is so far so good when it comes to Novantrone. It has been the one and only MS medication that has actually worked or even done a bit of good for me. I have been on everything and this was kind of a last option thing and for the first time in I can't remember how long, I felt like I was getting my life back.

The part that has been difficult over the last few months for me is the interference of other medical problems. Even with those, my MS has maintained very well.

Most everyone I know who has been on Novantrone has been very successful, it gave them their life back. Having said that, many of them did end up having a relapse or having their MS progress after they were done taking it. I am not sure how many (if any) of them started on another medication however.

My hope is that by time I am done with the Novantrone, there will be something else I can take....so hopefully I do not relapse. I will of course keep you updated on how it goes.

My doctors have mentioned other types of chemo that have been successful in MS (Cytoxan & Rituxan are a couple of them). There was also a study done in Europe that showed many people were successful with using Copaxone after being on Novantrone. That this helped them even if they had not previously responded to Copaxone.

Not to mention there are many clinical trials/studies going on. I am hopeful there will be something more available very soon!

Take care,
Jaime

Jaime said...

Diane,

I was also going to mention that I am glad to hear you have done well in spite of other medical problems. Ovarian cancer is a hard one. I had early stage Ovarian CA 7 years ago. This was way before MS was even a thought. I was treated with a hormone variant chemo drug for 9 months that actually did damage to my liver (caused me to have NASH...confirmed through Liver Bx). From what I was told, that is not all that uncommon. Many meds can make the liver react.

I am glad to hear after your hysterctomy your levels went back to normal. That has not been the case with me. Some of this is thought to be because of how young I was when I first got sick and had my hysterectomy (I was 24). Of course it is all just speculation. I have even been told that my history of cancer could have been what brought out my MS. No one really knows.

Personally I just think this is my trial in life. I was not blessed with healthy DNA. :)

I apologize that I had not added you to my blog roll yet. I will get on that right now.

Take care,
Jaime


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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