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New Lesions and Pain!


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Old 01-02-2011, 04:53 PM   #1
ChrisRenee79
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New Lesions and Pain!

Hello again,
I took some time off from the boards due to such a busy work schedule, wedding planning and trying to focus on getting my Rebif routine down for the past few months, but to be honest, I have missed keeping up with everyone....
I have been on Rebif for about 6 months and although I had a rough time of it at first, things seem to have evened out thank goodness - other than redness at the shot site there are no real side effects anymore.
So after the quick update, now on to the reason for my post... I got the results of my MRI from last week and it seems that there are more lesions than last time (I went from 2 to 5 or 6 in 3 months previous to starting Rebif). Im guessing that the lesions might explain why Ive had so much fatigue over the past month or so, and although the increase in lesions concerns me a little, (doc is going to compare my last MRI to the current one again this coming week before we figure out what to do), what concerns me more is that in addition to the new lesions, nerve pain in my legs woke me up out of a dead sleep early this morning, has spread throughout my body as the day has gone on, and hasn't let up. I have taken all of the meds that I possibly can to try and curb the pain (including upping my Neurontin to 3 times today rather than 2 x 300mg) but nothing has helped - I also took Jayhawk's advice and tried the heating pad as well. My concern is that although this pain is not a totally new symptom, it is exactly what sent me to the Neuro and caused the first round of steriods in the first place... I know that a relapse is considered a "new" symptom for 3 days, but with the new lesions and all this pain, Im wondering if its related if it may be the start of a relapse??
Any ideas/advice?

Thanks so much,
Chris

------------------------------
Fighting the symptoms since 2008
Officially diagnosed June 2010
Treating with Rebif, Neurontin, Baclofen

 
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Old 01-02-2011, 06:20 PM   #2
MSJayhawk
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Re: New Lesions and Pain!

Welcome back. Meds are no guarantee that new lesions will not appear. Some of the lesions in your most current MRI could have appeared right after your previous MRI. Please do not let lesion count get you down.

If the neurontin is not working, you need to get weaned off the neurontin under your doctors supervision.

As for your pain, I certainly empathize with your situation. I would not fret whether you have a relapse coming or underway. Treat your relapse proactively and try not to let anything get you down. The holidays are over and might have contributed to what you are experiencing. The holidays bring stress- whether good or bad, stress is stress. Weather can also be a factor in your situation.

Try to rest and relax- you mentioned working a lot.
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Old 01-02-2011, 06:53 PM   #3
MSNik
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Re: New Lesions and Pain!

Hi ChrisRenee- welcome back! Im glad to hear that at least the Rebif got easier for you to manage. You stated that you have been on it for 6 months now. Guess what? It just started to work. Actually, they say 6 months from when you hit 44 mcgs, and im guessing that you didnt hit that until month 2...meaning, you still havent hit 6 months at full dosage...

My first 6 months on Rebif, I had 3 new lesions, 2 bouts of Optical Neuritis- and was absolutely POSITIVELY Sure they were going to take me off of it...but my doctor insisted I endure 6 more months...and repeat the MRI. At that point, I had no new lesions and guess what? 4+ years later, I still havent had a new one. IVe also not had a single new symtom, or a relapse.

Im just telling you this as an FYI....obviously you have to follow your doctors advice, but he may tell you the same thing. If you ask anyone with Serano, or Rebif, they will tell you to give it a few more months before you re-check your MRI. As long as you are tolerating the medicine, without side effects, its probably working for you.

As for the pain in your legs. Ive noticed that change of weather brings those things on...as does exhaustion. Like you, I work 50+ hours a week, Im also in grad school. When I dont take care of myself, nothing helps! Its important to stretch, and to get rest- and magnesium, believe it or not can help muscle cramps....

I hope you get answers soon. its good to hear from you.
Nikki
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