MS Specialist-- update

[sadie405]

Hi Everyone--

Well, no names, but I wasn't blown off, either.

The MS Specialist scheduled another brain MRI for mid- September, which will be exactly 6 months from my last brain MRI. She wants it on the same 3T machine with same slice/location/etc in order to check for new lesions. (She doesn't trust signs of progression when done on different Tesla strengths, or even for that matter different machines with the same tesla).

She is also of the opinion that even if it doesn't show up early on, there should be "evidence of inflammation" in the CSF so if there are new lesions, she wants to repeat the LP.

I left there feeling fine, but for some reason still had a good cry when I got home. I think I had to release the tension. It's a pretty rotten feeling, being the neuro patient giving your history, trying to explain/describe things which are no longer present, but which were all too real and crappy a few weeks or a few months ago. Also, it probably doesn't help feeling so self-conscious and aware of being observed at every moment---(is the patient well-spoken? educated? a reliable source? mentally stable?)--- too much pressure!

Not to mention, the striking difference in power position. As I put it to my husband, I'd a million times over rather be the person getting paid a lot of money to solve the fascinating problem. Instead I am the one with the crappy symptoms trying to get fitted onto the packed schedule-- good times!



Thanks for listening :)
Sadie

[patientnurse]

Oh Sadie, I agree with how you feel! Just the pressure of going to an appt, the stress of it all-is too much. I cried hysterically last week as soon as I got out of my appt (mine was not a happy trip) but still I do understand!

Glad she is going to give you another MRI! That's great. I hope she finds what she needs to give this thing a name!

Chanda

[cheesymum]

Sadie, I could've written this:

~~~it probably doesn't help feeling so self-conscious and aware of being observed at every moment---(is the patient well-spoken? educated? a reliable source? mentally stable?)--- too much pressure!

Not to mention, the striking difference in power position. As I put it to my husband, I'd a million times over rather be the person getting paid a lot of money to solve the fascinating problem. Instead I am the one with the crappy symptoms trying to get fitted onto the packed schedule-- good times!~~~

myself after my appointment today.  It appears we are on roughly the same schedule with our docs appointments and MRI's.  My doc doesn't want an LP unless something shows up on the MRI and I'm fine with that.  I wasn't looking forward to having one anyway.  ;)

Good luck to us both on our upcoming MRI's!

[sadie405]

Yes-- the weight given an LP seems pretty dependent on the neurologist, as far as I can tell.
I had such a bad reaction after my first LP, can't say I'm looking forward to a repeat.

But yes, her course of action makes sense to me, too. :)

[Sidesteps]

This is good news, IMO.  :) Her approach makes sense to me - get another MRI and see what the changes are; if there aren't any changes then wait until another attack to document clinical evidence. :)

Sounds like she just has to determine DIT --- From what I read, this is hard when your Neuro examination is showing similar clinicals, your MRI doesn't have any new lesions or Gad enhancement either.

I'm not sure what to think about these spinal taps. The more I read, the more I am not sure I want one. It seems you can have MRI evidence but it really throws them off if the ST is negative.