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The Day After....

Yesterday was my appointment with my neurologist. It went pretty well. We discussed my concerns with going back on the Avonex, what my treatment options are, and how I am doing. So...here is the update.

  • No more Avonex for me! I am happy about this as I did not like the way I responded to it (see previous post). Now, for anyone out there reading this and is considering Avonex, please remember that we all respond different and just because this medication did not work for me it doesn't mean it won't work for you. It just might be the right one for you. You won't know unless you try!
  • Unfortunately I am still having this flare....although it is getting better. According to my neurologist my illness is "very active" right now. She is having me get an echo today and if everything looks good I will be starting on Novantrone sometime in the next week or two (as soon as my neurologist gets the results back).
  • I will go back to see her 6 weeks after the first Novantrone and if I am improving she is considering putting me back on Copaxone. I was not successful on this at one time, however, I also did not have a lot of side effects....I tolerated it okay. Our hope is that if the Novantrone can calm down my MS then hopefully the Copaxone can kick in and work for me. We will see how this goes. There have been some studies recently that showed improvement in people with progressing forms of MS that combined Novantrone and Copaxone....so I am remaining positive that this WILL work for me!
  • Not only am I still having a flare...but my MS is progressing. I came straight out and asked her if my MS is progressing and she said that I am experiencing a combination of an active flare and progression. This is why it is so important to find something to calm down my MS. Of course this is not what I wanted to hear (no one likes to face the fact that we are progressing), but I am not surprised either as this is my third flare in less than a year.

So, basically everything went well. She confirmed what I thought may have been going on....progressing and there not being many options in regards to treatment for me. As difficult as it can be to hear these things sometimes, I am actually glad that I know now rather than just thinking this is probably what is going on. I don't like the idea that I am progressing...no one does, but I know that I have a great doctor and the best family...together we can make this work.

Also, I had my endoscopy yesterday....everything went well. No ulcers, there was some redness and inflammation...not too surprising for someone with GERD. My GI doc took some biopsies but over all everything looked about the same it did on my last endoscopy. There is nothing to show what is causing all that abdominal pain....on to the next test.

Well, I hope you are all doing well. Please take care of yourself and have a great Friday!

4 comments:

baitulos@aol.com said...

Not certain if saying, "Glad to hear things went well for you", actually fits your experience...considering your news. Here's hoping Novantrone does the job!

Linda D. in Seattle

mdmhvonpa said...

Progressing ms ... not a good prognosis. Any ideas for halting it?

Zee said...

Yipes, Jaime - I hope the treatments (and combination thereof) work to calm things down a bit. Sorry to hear things are progressing, but I'm glad to hear you have such a good doctor and that she's doing what needs to be done...

Will keep you in my prayers and send positive thoughts your way!

Jaime said...

Thanks to all of you for your support. It is never easy to hear that you are progressing...but it is not a big surpirse either. Sometimes it is just easier to go on not thining about it when it has not been talked about. I am hopeful about the Novantrone and will be loading up on all the info about it. I would love to hear from anyone who has been on it...I understand we each have our own experiences but it would be nice to hear how others did. In the meantime I am trying to just get take it easy and stay positive. I hope all of you are doing well. 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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