I moved out west to a dry warm climate from the humid frigid northeast.
went to the neuro here so that I could get a script and continue the meds when my insurance changes.
So here is the deal. the neuro i used to go to and have been going to since 2001 was not a MS specialist, the only real specialist in the area was not taking patients at the time and the one i ended up with was an opthoneurologist so it fit with the optic neuritis and well he worked with her, so maybe he would consult.
This is not to say he didnt know about MS, we discussed therapies and medications and all that good stuff, but we just seemed to do the same squeeze, hold, push, walk ever time and nothing else was really ever said. New drugs were suggested when avonex did nothing and i had a lot of brain activity that year, but then we just coasted on rebif, even when i would comment that my right side was getting weaker,, or that my walking worstened, or that i just all of a sudden had tinnitus.
I finally went in and said, im going onto tecfidera, he said okay. We were going to wait until it had been on the market a year, but i decided i didnt want to wait because i thought rebif was failing me.
Anywhoo, i get out here and they have a center for brain research and they take my insurance. You bet your bottom that I called for an appointment. Next year... okay i guess... SO i fill out the new patient info with her, and then they go back in to mark me in for the appointment, hey a cancellation on friday. Yes, i will be there.
New doctor is nice, goes over my MRIs for the last 4 years which i have on dvd and comments on the incredible inaccuracy of them and that there is no way to compare from MRI to MRI since they were so far off on the brain slices that you werent looking at the same pieces of brain. GREAT!
She asked why the doctor didn't fdo this or that or why i didnt ask for the other thing.
I never really thought to question him, i mention bladde issues and he poopoo'd it, must be nothing to worry about.
I mentioned the weakness, and yah okay, guess it is nothing too.
My biggest grief is the tinnitus and she says it is not a normal MS symptom and there is no proof rebif causes it (that is what i figured caused it)
But then she points out a legion right in the ocular region that probably is causing it... dagnabbit.
Could steroids have stopped it or helped? maybe, but now we will never know.
Can't walk well? Did I ever have a thoraxic spine MRI. a whaaaaaa? I guess that would be a no. apparently she is expecting to find legions there since i am getting that done now.
Well by the end of the appointment the neuro was pretty mad, feels i was mistreated and am way worse off than i needed to be (I do not think i am that bad really, but what do i know)
I mean I know there is nothing I can do to change the past, but now I am ticked at myself, I should have drove the 3 hours to the specialists in the neighboring city. I should have pushed when the MS specialist (she left to go work in that city) came back to get into her schedule.
Just needed to rant and get that off my chest, i do not have people to talk to here as my family is still back east.
Really stinks that my quality of life is worse than it could be
I was perfectly happy with my station in life until being made aware of how it should be, guess that is how it all works out in the end.
if you made it this far thanks for lending your ear, if not :P
went to the neuro here so that I could get a script and continue the meds when my insurance changes.
So here is the deal. the neuro i used to go to and have been going to since 2001 was not a MS specialist, the only real specialist in the area was not taking patients at the time and the one i ended up with was an opthoneurologist so it fit with the optic neuritis and well he worked with her, so maybe he would consult.
This is not to say he didnt know about MS, we discussed therapies and medications and all that good stuff, but we just seemed to do the same squeeze, hold, push, walk ever time and nothing else was really ever said. New drugs were suggested when avonex did nothing and i had a lot of brain activity that year, but then we just coasted on rebif, even when i would comment that my right side was getting weaker,, or that my walking worstened, or that i just all of a sudden had tinnitus.
I finally went in and said, im going onto tecfidera, he said okay. We were going to wait until it had been on the market a year, but i decided i didnt want to wait because i thought rebif was failing me.
Anywhoo, i get out here and they have a center for brain research and they take my insurance. You bet your bottom that I called for an appointment. Next year... okay i guess... SO i fill out the new patient info with her, and then they go back in to mark me in for the appointment, hey a cancellation on friday. Yes, i will be there.
New doctor is nice, goes over my MRIs for the last 4 years which i have on dvd and comments on the incredible inaccuracy of them and that there is no way to compare from MRI to MRI since they were so far off on the brain slices that you werent looking at the same pieces of brain. GREAT!
She asked why the doctor didn't fdo this or that or why i didnt ask for the other thing.
I never really thought to question him, i mention bladde issues and he poopoo'd it, must be nothing to worry about.
I mentioned the weakness, and yah okay, guess it is nothing too.
My biggest grief is the tinnitus and she says it is not a normal MS symptom and there is no proof rebif causes it (that is what i figured caused it)
But then she points out a legion right in the ocular region that probably is causing it... dagnabbit.
Could steroids have stopped it or helped? maybe, but now we will never know.
Can't walk well? Did I ever have a thoraxic spine MRI. a whaaaaaa? I guess that would be a no. apparently she is expecting to find legions there since i am getting that done now.
Well by the end of the appointment the neuro was pretty mad, feels i was mistreated and am way worse off than i needed to be (I do not think i am that bad really, but what do i know)
I mean I know there is nothing I can do to change the past, but now I am ticked at myself, I should have drove the 3 hours to the specialists in the neighboring city. I should have pushed when the MS specialist (she left to go work in that city) came back to get into her schedule.
Just needed to rant and get that off my chest, i do not have people to talk to here as my family is still back east.
Really stinks that my quality of life is worse than it could be
I was perfectly happy with my station in life until being made aware of how it should be, guess that is how it all works out in the end.
if you made it this far thanks for lending your ear, if not :P
Comment