Not a lottery winner

I got a call from the endocrinologist's office, letting me know that they got the lab results from Hope Research.  The Hope labs were taken since the last endocrinologist labs, so they were concerned and requested that I get labs done again.  They are sending a lab order so I can go in; then I can go see the endocrinologist's office again.

In related news, one of my MS friends had the CCSVI treatment done recently.  I have contacted her to get more information on her progress and who to contact for testing at AZ Heart Hospital.  My husband and I have discussed it and feel that I should at least get tested before deciding if I will continue in the Alemtuzamab trial.  I am enrolled through May, but I can continue in the extension trial for another 2 years.  If I continue, I cannot have any alternate MS treatments such as CCSVI treatment.  I don't want to seem desperate or cynical, but I'm pretty angry that my neurologist acts like I won the fucking lottery--he has four patients on Alemtuzamab and 25% are expected to experience thyroid issues, and I'm the one.  Whoo, fucking, hoo, and yay for me, and stuff.  He also, in my opinion, completely disregards any complaints I have and acts like I haven't had any more MS symptoms since being in the trial, that they are "residual" to previous exacerbations.  It's not worth changing doctors--I've been around enough of them now to know that he's very similar to the rest.  They are trying but they have biases and can't be objective.  I understand but I'm still pissed and know that I have to be my own advocate and take my future into my own hands.

This is MS Awareness Month; last week was MS Awareness Week according to the National MS Society (US).  I have been reading and viewing a lot of MS news and views and some of it originates in other countries.  There is research being done; maybe there is progress being made.  But there is so much unknown and there are so many people with MS who feel they are not being HEARD.  The doctors have a list of symptoms they expect, and those are MS symptoms.  The other symptoms we complain about are not MS symptoms because no one else has them.  Except that some one else DOES have them--we're online and we find out the TRUTH--we're not alone in any of these odd, annoying, sometimes painful symptoms.

It would be so nice to have the luxury of not thinking about this or making these decisions.

Here are 10 links for MS Awareness:

This is war!

Numb 

Beautiful Day 

Faces of MS

Liberation Treatment (may have posted previously)

Making Medical History

Death caused by MS (Canadian MS blog)

What MS feels like (differs by MS patient)

The History of MS (Facebook photos of text)

I say I’m fine because I wish I was, because I want to be, I want to believe that someday I can be.