Decision

[Trinkster]

I have "degenerative neurological demyelinating disease". Have been followed @ MS clinic for 7 years. My Neurologist is considering starting me on Copaxone.  Is this a good thing?  I still do not have a diagnosis of MS.

[sllowe]

Hi there,
Welcome - I'm just a patient, but  I say it's good too. Not all MS is typical, and if the doctor cannot be certain, but is willing to treat with the possibility it is indeed it could be MS causing the damage, then why not try it. Sounds like a proactive specialist who is being cautious to not improperly dx you, but more than willing to look outside the typical MS and consider it a possibility when nothing else is a strong contender.

Just my opinion. Question for you though.... Are you acquiring more lesions throughout your 7 year following?

[supermum_ms]

I'm thinking the same as GG, "degenerative neurological demyelinating disease" is basically 'MS unspecified' and totally understandable in the early diagnostic stage but it can also be used when a neuro isn't willing/able to dx. Insurance may play a roll in dx too, some accept "degenerative neurological demyelinating disease" but not a classified MS eg RRMS.

If he's RX-ing Copaxone then i'd say your neuro may now be calling it  RRMS to get you on a DMD (Disease Modifiying Drug) otherwise you'd still be in the wait and see what happens mode. He/she is now treating the disease, giving you the chance to slow or stop it, so if you can its really worth taking.

I'm semi uncomfortable with the 7 year wait though, why now and not before? I think it wouldn't hurt getting a second opinion if you have any doubts or concerns, regarding either your dx or your neuro. Let us know what your decision turns out to be, its always good to get an update.

Cheers..........JJ

[jensequitur]

I always think it's funny when the neurologist is willing to sign off on giving you a DMD, but won't diagnose you with anything.

Demyelinating disease is a mealy-mouthed way of saying you've got MS activity, but it's not manifesting typically.  Many people are in your same situation.  Unlike you, their neurologist won't give them anything for it.  So I think you got lucky!

Copaxone and Betaseron are shown to help modulate the immune process, and helps prevent demyelination, so I would say it's a good choice at this point.

[kwarendorf]

I'm curious as to what diagnostics have been performed; C-Spine MRI, brain MRI, LP? If you have evidence of demyelination what has lead to 7 years of ambiguity?

Kyle