Ugghhh...

[alishape]

Looks like I might be heading back over to limbo land. My doctor doesn't want to tell me want I have, I am bot sure why they are so reluctant to call a kettle black. The last time I went I got another MRI. He said I have some new active spots in my brain (the spinal lesions were inactive), and so he was starting me on medication. I choose copax.

I called him to see if he would give me a referral to the VA MS clinic and he starts hemming and hawing about adem and how he still isn't sure what I have and it doesn't matter what we call it. What else gives you spots on your brain and an initial episode of TM? I think I hate him. I can't remember our conversation, but I know I walked out of his office thinking I had MS last time I went.

Can they just give you MS medicine with no diagnosis?

[gomer]

FIRST.........

You have a right to your medical records, request a copy of them, for yourself.

SECOND...
Are you currently enrolled in the VA health care system? If not that is the FIRST thing you need to do with the VA.

Then... Make a gp/ general med appointment and take a copy (keep one copy for yourself) your record with you to your first apt.

A gen med VA doc I think has to give the referral, I doubt they accept specialty clinic referrals from outside the VA.

THIRD... where I am, the VA does not accept much from outside sources. They will look at them, but they do THEIR OWN testing.

What I did, was make a GM apt, took copies of my (MS) relevant tests etc to a VA GP apt and she ordered the MRI and neuro referral, and the rest is history.

Hope this helps give you some direction to head...

Gomer Sir Falls-a-lot

[alishape]

Hi Gomer. I can't make an appointment with the VA. They told me I make too much money to enroll in the VA health care system. I just want to get on the books so if I have a bad episode and lose my insurance, I'll already be enrolled. The VA website says that any veteran regardless of service connection, (I put in the claim, but still waiting for the results), can go to the VA MS center, but apparently not if you make too much money. I am not sure what to do about that, I think I'll check out the veterans page.

[Redwings]

What else gives you spots on your brain and an initial episode of TM?

Neuromyelitis optica is a possibility. And yes, it does matter what you call it because NMO or ADEM and MS are different diseases and are treated differently.

No matter where you end up going, it sounds like you need a new neurologist and could benefit from getting the NMO antibody test to help determine whether you fit into the NMO Spectrum.

[cosake]

I think it's time for a second opinion, and likely a new neuro.

Good luck !

[minivanmama]

Bless your heart. I know you are ready to scream. I hope that it will all get worked out soon and you don't have to go back into limbo.

Lots of (((hugs)))