Intro and any one share my frustation?

[Ovieloverinla]

I posted here a couple of months ago and never really posted an intro!

I was diagnosed with MS in Sept. 2006, I was put on Betaseron for a while, but had to discontinue because I never got over the flu like symptoms.  I was then put on Copaxone which I did well on, but then stopped taking on my accord.  My LP came back negative, but my MRI shows lesions in my cerebellum and brain stem.

At first I got a definite MS diagnosis, since then it has gone down from MS, to probable MS, to the neuro actually saying "I dont know what is wrong with you"  I have had 2 MRI 2 years apart and they have shown no change.

My symptoms are headaches, muscle stiffness, facial numbness and pain, poor balance, neck pain, pain that goes down my spine when I bend my head down. vertigo, extreme fatigue and left arm weakness.  My legs also feel like they have weights attached to them and I am pretty much useless in hot weather.

My last neuro visit was a month ago, I went due to 3 back to back migraines, increasing vertigo and weakness.  My neuro was in a hurry and he seemed frustrated that I would waste his time.  He perscriped 400mgs of Rivoflavin and curtly told me "Well, I dont know what is wrong with you, your MRI shows abnormalities".  He told me to comeback in January.

Something tells me that, I shouldve stuck with the Copaxone, I was doing fine for 2 years and then this summer I got "b**** slapped" once again by these symptoms.    I partially blame myself for this merry go round.

I have an HMO, there is only one other Neuro in the group.  I am at the point where I dont mind shelling out $300 to see an MS specialist at UCLA, to finally rule this out.

I am scheduled for a physical in December and a whole bunch of blood tests were ordered, including thyroid.  I would love a definite answer someday!

[cainer]

   LOL!!   That  nero  needs help!1  sorry  but that was funny-- not  4  ovie!

  yes  get another  nero-  thats silly  - one time i  had a  yourkie  4  sale  and the girl  came up  wanting  2  buy  her
  
   she  goes  i  just  dont  know  looks like  she  has  terrier  n  her !!    Duh!!!!
          
    smile!1   tickey

[essdipity]

Hello and a welcome from me too.

That neuro is useless! Lulu is right that your stable MRI may be the result of your being on injections. But even if you hadn't been on anything, lack of change on MRI is no reason to rule out MS, though some dodo neuros seem to think so.

Your symptoms are classic for MS. Absolutely get a consult with a specialist at an MS center, even if you have to pay out of pocket. Meanwhile,  read up in our Health Pages here, and stick around for friendships and lots of support.

ess

[Ovieloverinla]

Thanks!

Yes, the "no change" MRI is why he revoked the diagnosis, to"well I dont know what's wrong with you..."diagnosis...I actually went back to get put on Copaxone again because my symptoms got worse.  The no change MRI was done in March, started feeling like I did prior to the diagnosis in June, finally went to nuero in September.  I actually feel better, I lucked out this time, but who knows if the same will happen next time?  I went 3 years with out any symptons, 2 of those on Betaseron and Copaxone.  I need answers.

Yes, I can get a second opinion, in the process of getting my medical records from this neuro!  Wish me luck!

[Lulu54]

Hello,
I don't think we have crossed paths yet - so welcome to our MS forum here.

Did your neuro revoke your MS diagnosis because there was no change on your MRI?  Well, Hello!  Isn't that what we hope being on Rebif, betaseron or copaxone is going to do for us?  Why would we be jabbing ourselves if we didn't hope it would slow or stop the progression?

Your neuro sounds like he needs a refresher course in MS.

Is there any way with your HMO that you can request a second opinion consult?  You definitely need answers and this neuro doesn't sound interested in finding them.....

be well,
Lulu