I was diagnosed in 2003 and after living with this for several years now, I have been there & done that with just about all the symptoms, so I won't bore you with the long list. I will say that when diagnosed due to having a severe initial episode, I started Rebif and suffered through that for 2 years, then suffered through Avonex for a year until I had enough of feeling horrible everyday due to the severe side-effects from these drugs. I have refused any "MS drugs" since May 2006 and will never go back to them. I know we all have our own opinions of the drugs but this is what is right for me.
I have had 2 relapses since 1st initial episode and I am reminded daily that I have MS with the symptoms that we all have come to know, too many to list. The main issue right now is dealing with the heat/humidity this summer. It is overwhelming.
I recently started looking into CCSVI, even though I first heard about it years ago. Maybe those who've had MS for a while will understand when I say that I don't look into every single thing I find about MS anymore like I did when first diagnosed. I came across this forum in a round about way. I was looking up CCSVI and read a comment posted by a Colin Rose, MD Phd, which then led me to his blog, Panaceia or Hygeia. He wrote that he wasn't blocked from ThisIsMs but his comments were deleted. He has gone out of his way to try to disprove the CCSVI treatment but that is not what got to me. On his blog, his post titled: “The perfect crime? CCSVI not leaving a trace in MS” – “Liberation” is a hoax, he writes:
"Because of the intermittent and prolonged nature of the disease, MS patients are particularly prone to faith healing, when they are given some hope for the future. There seem to be a lot of MS patients whose symptoms are to some degree subconsciously self-inflicted out of depression or to attract sympathy who could be helped with the right form of psychotherapy."
I do not know exactly why he is so fixated on disproving CCSVI treatments and did not take the time to bother finding out but I do know that his obvious bias against MS patients is exactly one of the issues we have to deal with. I guess because the exact origin of MS is unknown and it is such a mystery in itself or we don't look sick, that many have a hard time understanding MS, I have a hard time understanding sometimes myself! But this attitude of MS patients somehow subconsciously creating this disease to get attention/sympathy or it's 'all in our head' is hurtful. For me, it's actually quite the opposite. I go out of my way to do things for myself and rarely talk to others about symptoms that I have. It is hurtful because of all that we deal with and to have those that think we make this up is incredulous. This type of characterization would not be made for the many other chronic debilitating diseases and should not be made about MS.
Anyway, that is how I found this forum and I am glad to be here!
News
Site map
SitemapIndex
RSS Feed