Feel like you have to defend the MS diagnosis to the doctors?

[heliotrope]

This is starting to drive me crazy. I see a specialist (a neuro-opth/similar), and it starts all over again... "I'm not sure you have MS."
My neuro has no doubt I have MS. These office visits are massively demeaning. How do I make it stop?

[cosake]

Tell him "I'm sorry, I'm not here for a second opinion or an MS diagnosis, please work with me on xxxxxxxxxx." Straight-forward and to the point.

Or, ask him why s/he thinks it might not be MS ? Does s/he have a valid reason ?

[Toomnyhats]

I agree with cosake.

[Lendi]

I know that some don't want to put an MS label if it's possible not to. But, if it's already there...really. I too think I'd ask why they're saying no MS.

[heliotrope]

Unfortunately, unless you have my whole clinical history, it reads like I have CIS, not full-blown MS. They just read the MRIs (mine had the same lesions, six months apart), do a clinical exam (I pass) and ask about an LP (negative). I've had regular flares, but they don't want to hear it. Not justified and really frustrating.

[cosake]

heliotrope -

Do you see an MS specialist, or a regular neuro ?

Is the full diagnosis keeping you from being treated ?

I think MS is MS, whether CIS or not. I didn't bother differentiating between the two except with close family and friends. The explanation to others wasn't worth my time.

[heliotrope]

Cosake,
Thanks. No, I see an MS specialist - one of the top in my state. My family keeps reminding me that he knows what he's talking about. He treats hundreds of MS patients.
Many of these neuro-opths don't. It's just the constant dismissing that drives me crazy. Makes me doubt myself.

[Lendi]

Maybe you can give the "the look" as my DH says; Like are your crazy or what.

[cosake]

Don't doubt yourself, especially if you are seeing a great MS specialist.

[jumpinjiminy]

I feel like I have to defend my sanity to them. And seeing them could easily make one lose their sanity.

The demeaning thing is getting very, very old, like ten years ago.

[jumpinjiminy]

Unfortunately, unless you have my whole clinical history, it reads like I have CIS, not full-blown MS. They just read the MRIs (mine had the same lesions, six months apart), do a clinical exam (I pass) and ask about an LP (negative). I've had regular flares, but they don't want to hear it. Not justified and really frustrating.

Isn't it wonderful how they see one sliver of your medical history on one page and then decide they know what's wrong and the diagnosing specialist didn't?

[Spydre]

Ironically, it's not my MS diagnosis that I have to defend, it's my diagnosis of fibromyalgia. Despite the fact that his predecessor diagnosed me three years ago (the doctor that he replaced in this practice, so he has all the freaking notes and tests, etc.) he still goes back to the maybe you don't have fibromyalgia. This spring I had to go through the testing rigamarole for lupus or rheumatoid arthritis, despite being tested for these things multiple times in the past three years. It's like he never bothered looking over my chart to see that this stuff was done. There was a reason I spent 10 months out of 2 years in physical therapy, why the TENS unit was prescribed, etc.

[Lendi]

Despite all that's been found out about fibro there are still a lot of doctors out there that don't believe that fibro is a "real" disease. That it's a wastebasket diagnosis that's given when the dr. can't figure out what's really going on. Maybe that's what you're running up against. Hopefully, one day they'll see the light. It's awfully frustrating in the meantime, though.

[0485c10]

A few years ago i read of this happening to a young woman newly diagnosed with MS seeing a neuro-optho because of ms vision issues.

him saying over and over this does not look like MS caused her so much conflict that she ended up asking the neuro to write an order for an evaluation at mayo, her neuro was a full professor in neurology at a medical school, so he knew his stuff!

mayo agreed it was ms within a half a day. she went back to her neuro and apologized for doubting him but the neuro-optho had raised so much doubt in her mind that it wasn't ms.

her neuro told her that was ok, the neuro-optho does not have all her records, so he was not able to confirm or deny the disease. her neuro had all her records and he was sure it was ms, as was mayo in turned out after reviewing her entire records.

you may want to say something like that to the neuro-optho, that he doesn't have your entire records but the neuro does and he is certain it is ms. maybe also say something to your neuro at your next appointment & he can say something to the neuru-optho that you are finding it upseting and so he knows not to refer to this neuro-optho in the future.

[marti]

I don't know about "defending" MS to my neuro, but I have to educate her sometimes.