...another exacerbation

RedPenguins · 03-01-2009, 03:47 AM

Hi everyone,

I know I haven't been around much...but I think of you all often.

Well, I hate having to report this, but it appears I am in another exacerbation. This is my second once since treatment in July. As you know, the first was in December and according to the MRI there was activity.

I saw my local neurologist on Friday...and according to the exam and symptoms present, it definitely appears to be a new exacerbation and not just continued from December.

I have weakness/numbness on the left side of my body - which I have never had before. My left side was always stronger than my right side, so this was a first. The other usual suspects are present as well: mild vertigo, bad headaches, extreme fatigue yet worsened insomnia, double vision, increased numbness. Symptoms started Fri 2/20 and I waited a week to see if anything would pass and go away. Didn't happen, so I went to the local neuro. He didn't send me for an MRI as it didn't seem warranted based on the exam, it seemed clear there must be activity going on.

My last MRI was on 12/14. I had treatment on July 3, so the 9month MRI would my April 9th. I am not sure if I should wait.

I began IV steroids today, 1gram solumedrol. Want to nip this in the bud before it interferes with my life/work, etc. [This is my 5th course of steroids since I was diagnosed last January - -jan2008]

I just emailed all of this to Drs. Hammond and Kerr @ JH. I asked about revisiting the re-dosing option.

I'm pretty besides myself at the moment.

Local neuro does not think copaxone is doing it for me. Now, I know I am on copaxone for different reasons, per se, than just anyone suffering from MS. What are your thoughts on this? He suggested revisiting Tysabri. To be honest, that makes me a little nervous, though as he said, if my T-cells and immune system are up to par, it shouldn't be a problem....but I'm not sure about it. I also didn't have the best reaction to it for the two months that I was treated with it last spring.

When is it time for us to re-visit the idea of re-dosing on the HiCy? I was excited a few weeks ago when they explained that maybe that last exacerbation in December was remnants and that there was still a chance I could regain the wellness I had experienced from July-December. However, my excitement and hope is waning....especially as I look at the IV pole sitting in my house again.

Keri

dmplaura · 03-01-2009, 09:02 AM

Awww Keri, I hope you're feeling better soon hun.

FinLady · 03-01-2009, 10:35 AM

Keri, sorry to hear about the flare.

If you've been on copax for more than 6 months, your neuro may be right that it's not the DMD for you. As to the HiCy, I'm not sure what it's time table might be. I know they usually say wait for the 4th infusion for Ty, but don't know about the other.

Hope whatever comes next will help you out. Hang in there.

gonnamakeit · 03-01-2009, 12:11 PM

I have no solutions for you either, but wanted to say how disappointed I am that the JH treatment is not working for you. It seemed like a good possibility for RRMS patients when so many started on the program.

Any idea how the other patients who started about the same time as you on the protocol are doing?

gmi

Dejibo · 03-01-2009, 01:37 PM

copaxone took a FULL year to start working for me. I was so worried. They said it can take up to 24 months for it to really kick in on some very resistant folks.

I am sorry you are feeling lousy.

barb02 · 03-01-2009, 01:57 PM

I'm also sorry that the HiCy does not appear to be working. I think you would need to check with JH neuros before starting tysabri again. For some reason, it does not seem like a great idea. I guess it depends on your immune system, etc. I do not really have any suggestions either. You were only suppose to be on copaxone for one year, right?

SallyC · 03-01-2009, 02:23 PM

Well, Poopy, Keri. After all your hard work, this just totally sucks gravel.

Sending healing hugs for you, dear one..

NurseNancy · 03-01-2009, 06:22 PM

sorry keri. that is not good news.
i can't answer your Q about meds but i hope your dr can help you.
think about it and i'm sure you'll come up with the right option for you.

i hope you feel better soon.

RedPenguins · 03-01-2009, 07:24 PM

Deji,

I know - but the thing is - I'm not on copaxone for the same reasons/mechanism that most people are on it for. After HiCy it's supposed to train the brain not to attack itself.... So, I'm only supposed to be on it for ONE year total, which will be in August.

I need to see what the docs at JH have to say about this new relapse....then I will know more. But right now, I'm not feeling confident. Feeling wired from the steroids going in my arm at this moment, but not confident.

~Keri

karousel · 03-01-2009, 07:53 PM

I'm sorry you are not doing well right now.

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