In my case people assume I'm less disabled than I am because they are more familiar with the relapsing/remitting form instead of what I have; primary progressive ms. It is unfair that there are few studies and no treatments to slow progression for me.
I did not say life is unfair. There are millions of people with fewer or no advantages than those of us with ppms. What is unfair is that pharmaceutical companies and studies are aimed at treating/slowing progression of the more prevalent rrms. Because there is no financial advantage to treating the less common disorders, we are less likely to benefit from new advances that would take decades and a fortune to accomplish even if someone were interested in helping the few. What I take exception to personally are the sarcastic and flippant remarks that have been made to me by numerous "specialists" that I should just learn to accept my quickly advancing disability, and refuse to help me get into any studies or offer any options. Twice in the last couple of months I was told that I know more than they do about my diagnosed disorders (ppms, ccsvi, and lyme), and didn't understand why I made appointments with them. I was told that they didn't know anything about the treatments I have read about in their fields that could help me. I was told to continue my own research because I seem to "be good at it".
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Hello Jennifer and Dan,
I am not aware of any "discrimination" against me because of my MS. My friends know what my limits are pretty much so there is no problem there. I find people more helpful to me than anything else once they know I have MS.
Dave