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


Postby RedPenguins » Tue Nov 25, 2008 5:34 am

So, I just wanted to update everyone. I actually sent this letter over to my docs at Hopkins.

4.5 month update since treatment:

Well, it has been 4.5 months since I underwent the HiCy treatment….which also means that I have been diagnosed with MS for 10.5 months.

For the first 6 months of 2008, I lived in tremendous pain and with most of my abilities declining on a near-daily basis. My life suddenly had more disabilities than actual abilities.

I had trouble walking – on my best days I was able to use a cane; on my worst days I had a walker (which meant that I probably wouldn’t leave the house).

Many days I would walk into a room and forget what it was I was doing in there. One day I couldn’t even remember the names/locations of body parts. No, I’m only 32 years old – so this wasn’t menopause. And no, my memory had never failed me like this before – so it wasn’t commonplace or acceptable in the least.

I had to take cold showers…not something I like – however, the heat involved in a warm shower would send me into a “pseudo” exacerbation – making me feel like pure crud. All of my symptoms would act up.

The heat here in Los Angeles has been unbearable since early spring. There were days that within minutes of stepping outside my house the heat would hit me – and I would completely lose my vision. I thought I was going blind. I would also become dizzy and extremely exhausted. It would often take a few hours of cooling off before things returned to “normal” – though normal was anything other than my pre-MS normal.

Double-vision was now the norm. Anytime I had regular vision was an anomaly.

I had trouble driving – if it wasn’t my vision failing me, I was dizzy or had terrible headaches.

Speaking of headaches, on good days the pain ranked a “6 out of 10”…on bad days, it was more a 10 out of 10.

The dizziness was often so bad that walking down long hallways in office buildings caused me tremendous anxiety because I was sure I would fall over or walk into walls.

My level of exhaustion was completely out of control. I used an ADHD medication to help with this. I was doomed on any day when I forgot to use this medication. After an hour or two of being awake, I could barely hold up my head. Even with the meds – my stamina was still so poor.

I couldn’t make plans because I never knew how I was going to feel on any given day. And when I did have things planned, I needed to be sure that I rested the day before and also had the day after reserved for resting. Of course, this never guaranteed that I’d be able to “survive” whatever it was that I had planned.

I stopped watching TV and reading books; my level of concentration had plummeted and doing these things just made me feel worse.

Couldn’t go to movies or plays – couldn’t follow what was going on!

In May, I went down to San Diego for a weekend getaway with my 20 months old G-dson, his mom, and another 20 months old and her mom. We went to Sea World. I had to ride in the electric cart. We went to the beach. It was exhausting to me. I remember sitting in the sand and crying – watching my friends chase their toddlers – and thinking that ‘this is it’ – this may be the last time I can experience such pleasure. It was wonderful the minutes that I could enjoy playing with Journey – but a 20 months old little boy is very energetic – and his “Boo” couldn’t keep up with him anymore. I treasured the time that we played in the water…and I hated the times when I had to sit because I had nothing left in me to give to him. But I feared that this would be the last time I would be able to partake in this fun stuff of his childhood (let alone the possibility of me having my own child seemed to be dwindling by the day).

Fast forward to today:

A few weeks ago I went to the zoo with my now 2 year old nephew/G-dson. If I wasn’t pushing him in the stroller, then I was carrying him in my arms and if not that, then I was running and chasing him around a very hilly zoo! Oh, did I mention that it was well over 90 degrees outside on the day at the zoo? I did not need a wheelchair or electric cart. I did not need to sit and rest. I didn’t need anything except for this little boy with which to share this wonderful day!

At one point during lunch – I sat and cried. They were tears of extreme happiness, peace, and pure joy. These were tears that were so unimaginable just six months ago! This kind of day was not forecasted – no way it could have been foreseen to anyone who knows me. The days that were forecasted seemed to include the picture of me in a wheelchair on bad days and a walker on good days.

Now days at the Zoo or the park or out shopping or going for a walk – are the norm again.

And now….. I just finished helping paint my bedroom…I managed to help move some furniture and do the shopping for supplies. I cleaned and scrubbed some of the floors. J I’m working on re-modeling and fixing up my home.

Oh, after painting and cleaning – I took a nice, long, HOT shower. For 6 months I had only cold showers to look forward to….but yet tonight – it was my favorite relaxing hot shower. I got those back, too.

My vision is improving – and so times with double vision are now more infrequent than not.

The headaches have calmed down in the last few months – I rarely have a headache at the level of a 10…. I still do have headaches – but they are much less severe and with some medication, I can control the level of pain.

I’m reading and writing again. And back to enjoying some TV and movies.

I’m preparing a wonderful home-cooked Thanksgiving Dinner this Thursday.

Some days I even “forget” that I have MS. (I am reminded nightly when I have to “shoot-up” with my Copaxone.) But other than that – it is NOT the main focal point of my day to day life! My last MRI showed NO new lesions, NO enhancing lesions, and even showed SLIGHT IMPROVEMENT in some of the older lesions.

To say that this year Thanksgiving will have a new meaning would be an understatement. I had my second dose of Cytoxan on July 4th – and now in retrospect I can see that it truly was my Independence Day! And now I can be thankful for everything in my life – but maybe most of all – to the doctors and nurses at Johns Hopkins who gave me this wonderful treatment and with that – a new lease on life. And to my friends – who walked me through this when I could barely stand….it was your strength that I tapped into when I didn’t think I could live this life for another day.

My next challenge is to train to run another marathon (the last one I ran was in March 2006). My hope is to run the NYC Marathon next Fall….to which, Dr. Hammond said he would run with me!!
There are many other things that changed – mostly for the better – since having HiCy treatment in July. Some of the things may be silly and small, while others are large and more important…but they are all of great significance in my life. For each thing that I can do now that I couldn’t do back in July……there is a smile in my heart and another drop of hope that I’m saving up for my future!

I wish all of you a wonderful Holiday, however you spend it!

I hope you have peace, happiness, and health all around.

Peace and love,
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Postby Loobie » Tue Nov 25, 2008 5:58 am

Now THAT'S a thanksgiving story if I ever heard one!! That is absolutely awesome. I can't imagine how you feel right now except for glorious. Good for you!
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Postby chrishasms » Tue Nov 25, 2008 9:22 am

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