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Hi Gillila. Prepare yourself for a book.

You are in the once enviable position I was in during 2001 when I was diagnosed. Still relatively unscathed by relapses that healed...only minor sensory symptoms like numbness and weird, temporary visual quirks. took Avonex for three years but toward the end of those 3 years I had to start shopping around for another med because I started having relapses.

If I were in your position, I would continue the Avonex for as long as I DIDN'T have relapses. According to your post, you were experiencing disease activity prior to going on Avonex, and you have no new symptoms at present, correct? I think this post by Sodapopper sums up the treatment philosophy my neuros have all subscribed to:

<< I've never heard of a neurologist telling a patient that they could consider going off meds because they are stable. That is the point of going on and staying on med's...to avoid or lesson future attacks. I've been on copaxone for 8 yrs and 3 months, with (knock on wood) no symptoms or relapses, and every time I see my neurologist, he tells me to keep taking my copaxone. I'll be interested to read what others think of this.>>>

So: Since I gave the MS a chance to demyelinate my system for three years before going on DMDs (I was in denial) on my first MRI, my brain looked like a piece of swiss cheese. I have not gone without a DMD since my Dx in 2001. When I started having relapses, I switched. I started with
Avonex (3yrs)
Tysabri (7 years and a high JCV titer)
Gilenya (1 year with two vicious relapses)
Lemtrada (First dose March 2015)

In this time frame I would say I probably have at least five new lesions on top of my already heavy lesion load due to times I was on ineffective DMDs or none at all (washout periods). My theory about why the last two relapses were so bad is as follows:

Disability is not determined by lesion load. It is determined by lesion placement. My last two relapses affected everyday living functions. Speech/swallowing and balance. I was still in a full-blown relapse when undergoing my first Lemtrada infusion. The hospital made me wear a fall risk bracelet and use a walker. Before I checked in for the Lemtrada, I had collided with walls and doorframes, fallen in the bathtub, and given myself facial cuts and a black eye on a doorframe.

I'm not sure what the typical progression is for demyelination. The usual pattern seems to go from light symptoms like numbness to severe symptoms like falling/speech/swallowing. My interest lies in why the disease targets myelin in certain areas at certain times and not others until later...the geography of the brain... Are the nerves/synapses responsible for more complex brain functions more heavily coated with myelin, and thus more insulated against repeated exposure to the T-Cells responsible for attacking them?

I DID have an interesting conversation with a physical therapist who suggested a hypothesis that since I was cross-dominant (that's having one side preference like being left handed and one side preference for vision like having your right eye be the dominant eye) my brain was possibly wired in a such a way that I had redundancy built into my brain wiring. Redundancy is something engineers design for to delay the breakdown of a system. It may have made it possible for me to escape serious symptoms as long as I did and still function physically without symptoms.

Now, I have apparently outlived my luck. I am still recuperating from the relapse that took my balance, my endurance and stamina, my singing voice
( :( ), my confidence. Thanks to the rehab therapists who taught me core exercises, I am starting to get my voice back. Unfortunately, I have not escaped the long term effects of hidden MS symptoms. Cognitively, I have a hard time processing information in the normal time range for my age; my short term memory is also subpar for my age range, andd I cannot tune out distractions very well. AM I bitter? See username. :mad: All I can do is apply myself to rehab and be forgiving of my limitations.

So Gillila, I would not go off the Avonex. You want to give your body every chance to fight this craptacular disease.





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