Still in Limbo Land - 2nd Neuro appt not good

[JulesL5S1]

Well despite the ringing endorsements from my neurosurgeon and PCP I am not impressed by the new neuro Dr. C.  Based on the .7T open MRI without contrast he says I can't possibly have MS.  Despite the neurosurgeon being 50/50 on MS and thinking I could have both MS and cervical spondylosis.

This neuro wants to pursue a sleep study to see about narcolepsy as a possible reason for my fatigue.  I'll do that, if only because the more that can be ruled out (or in) is a good thing.  He did take me seriously about my fatigue issue when I said that I was hypothroid and I know what that tiredness feels like and this is nothing like that.  

And the other positive is he gave me samples of Provigil to try.  If that helps my fatigue then I may be able to work more - which would help me pay for all the medical tests.

And I will follow up with the cervical disk surgery in January 2009 (need to have more sick leave and a new flexible medical spending account balance).  Even I can see the problem on the MRI.  Like the neurosurgeon said.  It is possible to have two problems and at least if this is fixed and the problems continued then it is another thing ruled out.  If the problems go away after the surgery then Hallelujah!!!  And because metal pins will likely be needed then no more MRIs.  So the lesion counting doctors would have to use something else to make a dx.

This neuro refused to order a 3T MRI of my brain.  He is ordering a EMG of my legs.

I know that MS is an NBE dx (i.e. no better explanation).  However, after eight years - yes since Jan 2000 when this started major it has been MS or xxx.  There is always a reason for doctors to operate or treat xxx.  So many operations and treatments and episodes later the saga continues.  MS is still a 50% chance.  The rapid detioration that began in Jan this year is a major concern for me.  

I'll take the Provigil and hope it works on the fatigue.  And do the EMG and sleep study.  Then I'll see.  

For now I am going to have a good cry and lay down.  I just want to know what is wrong!

[Wobbly]

It does take time and testing to rule out so much....in the furture is there a closed MRi that you can use as well...it might help... how are your symptoms?  keep track of them, when the go away and if they return...OK...

don't take this too hard...we all know how you feel and understand it's frustrating... take care of yourself and keep in touch on how things are going...OK

hugs
wobbly
LL

[Sarahsmom46]

Keep plugging away on the diagnosis and do what the doctors suggest so you keep moving forward.  My neurologist suggested a sleep study too, and I did that last weekend.  The good thing about the sleep and EMG studies is that the information can be helpful whether they find anything or not.  This is a ruling out journey that you are many of the rest of us are on.  Along the way you may learn something that you wouldn't have known if you didn't go through with the tests.  

Julie

[AMO]

oops...
p.s....
can your PCP write orders for MRI? Mine does all the time when my neuro wants onee , since we are in different towns and hopsital is afflianted with my gp.
worth asking.

[AMO]

hi juless,

i  am sorry to hear you have a disapoinnting apppt, when  i you just want a little help and relief.

What surgery will you have ?
a couple thoughts..... my brother once had a disk removed.... they used titanium. I also have titanium plate in my skull  anda have had many mri since wiithout any problems. There are some metals that can not be in the magnetic areaas, but not alll of them.
Talke about this if  this metal an option for your surgery .

i   hope the provigil will help you like it has others here.
take care, amo