ok ya'll thanks for responding..
I was tripping really bad yesterday!
He called me back after his work day. He said the reason he didn't call me during 8-5 hours is because he wanted to leave a little time to answer any of my questions.
He first ask me what exactly my neuro dr told me. I stated the only thing that was said was I did not have MS, and then told me to have a great day. He ask if he could have my neuro dr's name and number to contact him.....and then he went on to say
He has contacted two colleages (neuro's in the same building as he is) and the top neuro dr in austin, Tx to confirm . All have agreed that this looks very much like a very rare condition called CNS vasculitis......
He ask how willing am I to have a brain Biospy......I hesitented on this one......I Never have put much thought into this to answer quickly...but he said that is the only way they can truly diagnosis it.
He said if in fact everything leads them to believe it is CNS then it is treated by Chemo and high doses of steriods.
He told me the best way to get a full-work up would be to go to the "mayo" clinic.......He then said since I was so young that he understood that's not always affordable for many people and suggested two teaching hospitals...one in dallas and one in houston. He is sending me a letter regarding the suspected diagnosis by him and the other neuro doctors.
I'm actually not freaked out as everyone THINKS I should be since this is a very serious condition....I guess only because I knew I've been feeling so bad lately and it's progressively getting worse.
However I am scared about
the chemo treatment for whatever reason..... I've heard horrible stories about
this, and even though this is completely different from chemo in cancer I think, but my grandpa took chemo for several months and he looked so weak and so deathly ill. He told us that if he would of know all that was involved with this he would of forwent the chemo and let things go naturally. He was 75 though so he knew he would live to much longer, I am 28 with two kids so I have to do what I have to do to be around for them.....
Has anyone here took chemo treatments for MS or lupus??