My update!

A board to discuss Revimmune as a potential therapy for multiple sclerosis
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My update!

Post by RedPenguins » Tue Jul 21, 2009 8:28 pm

Hi everyone,

Sorry, I haven't been around lately... (and geez, I missed a lot - especially the CCSVI stuff....gonna head over to that board in a minute).

I came home from my second round on May 26th. The treatment went off without a hitch. Once again, I could swear that chemo wasn't in the IV, as I didn't get sick at all. The first night, after the treatment, I was almost nauseous - but not really. They hadn't given me the ativan beforehand (not sure why they forgot) I had a few minutes of queasiness...but then I ate something (hadn't eaten all day) and I felt better. My white count and neuts went up SO quickly, no one could believe it. At one point, they were over 40,000 - I had to have fluids given to me at that point. (I'm really bad - even though I say my PCP when I first got home, I haven't gone for any blood tests. I guess this time I wasn't worried as much.)

I've been feeling great and feel like I've been given yet another chance to get my health in order. I had 5 great months after the first round of HiCy and felt like I didn't take full advantage of this time - I dove in head first and took charge of things. I started a "diet" 2 days after I got home. I've lost almost 30lbs so far...and still losing. I use the treadmill every day for at least 30 minutes. I've also been cycling - training for the MS Bike ride in October.

At the end of June I went to Las Vegas for a weekend. I was able to stay up all night (gambling)...and my brain was clear enough for my to play blackjack and keep count of my cards without getting lost.

The following week, for the fourth of July weekend, I went down to San Diego with my almost 3year old nephew and some other people. On Thursday, we spent the day at Legoland. Friday we went to the San Diego Zoo. Saturday we went to SeaWorld (from 10am until 10pm!!).... AND I WAS GREAT!! All that walking and adventure....and no problems!! Last year we went down to SeaWorld and I needed to rent one of the scooters...not this year. We had actually reserved one, not knowing how I'd be doing....but we didn't even pick it up. Oh well, we "wasted" $40! Best $40 I've ever wasted!

Last Friday it was 100+ degrees here (it's been in the triple digits for quite a while now - and I've been doing great! no problems) - anyhow, last Friday I rode 13 miles...the furthest I've ever ridden. Today I went down to the beach where it was 20+ degrees cooler - and I rode 20 miles and I FEEL GREAT!! I've never been able to ride 20 miles. The MS Bike ride has several options (15, 30, 60, 75, or 100 miles). My best friend is riding the 100 miles....I am definitely doing at least the 30....but I have 10 weeks to train and wouldn't it be great if I could get to 60! I've never been into cycling...running has always been my thing. I plan on training to run the LA Marathon next spring (I've run marathons in the past).

I still get some headaches. I stopped using provigil this past Sunday and I've been doing great without it. I was taking two a day prior to that....I think I was just scared to stop. I've been back at work since the 2nd or third week in June....and I feel good about that, too.

My vision is clear and my head is clear ('cept for the headaches). I haven't had any muscle spasm problems lately, either.

I should be going for my 3 month MRI in early August.

My hair - well, I have some peach fuzz. LOL ;)

Once again, my health has turned around drastically in a short period of time.... but this time, I hope it lasts!! I guess time will tell. I continue to recommend this treatment to those who are suffering...

Hope everyone is staying cool (enough) this summer....I know I'm living it up.


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Post by ElMarino » Thu Jul 23, 2009 5:55 am

That's all great to hear, I'm very pleased for you and I hope everything continues on course, I've a feeling it will.

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Post by rssugg » Thu Jul 23, 2009 12:05 pm


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Post by indigoinmotion » Thu Jul 23, 2009 12:34 pm

Hi Keri,
Great news!! I'm so happy for you!!
Can you tell me what your condition/symptoms were prior to the treatment?
Live it up, girl!!!

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