You are right about the difference between progressive and relapsing/remitting MS as being somewhat subjective.  In reality, there is a wide range, and you will not simply be either one or the other.  You will simply have characteristics that are more like one and less like the other.

I have MS that is progressive enough that we are comfortable giving it the label primary progressive.  Especially after reading this article, I am left wondering if I should discontinue taking the Copaxone designed for relapsing/remitting MS.  It is expensive, about $23,000 a year, and yet it costs me personally exactly nothing.  I have zero co-pay.  I am so used to the daily self-injections that I usually do not even feel them.  Someone though has to pay for them, and with no slowing of future progression, it is less than moral to continue taking it without considering whether I really need it or not.

In some ways, my disease looks like Malignant MS.  I must remember that MS is not one or the other, but in a range.  In my range, I am at least close to Malignant MS.  The question I need to answer is where I would have been for the last four years if I had not been taking the drug.  Supposedly, people with Malignant MS die months to a couple of years.  Why am I still alive?  Either I am not that close to having Malignant MS, or the Copaxone has kept me alive.  No neurologist on the planet can answer that question.  The only way to answer the question accurately is to stop taking the drug.  If I continue much as I have, then I did not need it.  If I instead quickly die, then I did need it.  I have absolutely no fear of the possible outcome, although I do have to think of my sister and companion left behind.  It would stress them; I would not know it happened.  

One last thought on that article.  The links to explaining how Social Security decides if you are disabled is less than helpful.  I hope that nobody actually needs the information.  They sure will not get it from that website.

Thank you very much.

I will be at the doctor's office tomorrow for an appointment with an eye surgeon. Much of my problem getting a diagnosis for my neurological problems are complicated by an eye tumor. The growth in my eye is not considered particularly dangerous and seems to be far enough from my optic nerve to not cause any confusion with MS symptoms, but until the tumor is addressed the neurologists are not taking any of my vision problems (probable optic-neuritis, double vision, stars/flashes, etc.) into consideration. This is slowing any diagnosis.

In the meantime, my tremors are so bad that I sometimes avoid going out in public. I can't make simple little excuses for them any more. The cognitve problems come and go on about a 30 day cycle (two weeks good, two weeks bad). When it's bad I avoid people because I can't remember their names, can't find the right words, and stutter when I speak. Overall this is getting worse with each cycle and is very scary. Bladder control problems started a year ago. Sexual issues started six months ago. Starting a few weeks ago I began getting shakes in my legs at night. In short, I see a deterioration in my health and well-being.

I really don't blame the doctors. They are working within established guidelines. They are testing and gathering information that may help down the road. I'm both hopeful and frustrated.

Thanks for listening,

KJ