Diagnosis--a different type of question

[steph74]

I have a question about what it means to have a diagnosis.  My brief hx is that I've been having neurological sx similar to MS for 7 years now.  Currently all MRIs and one LP were fine.  My current neuro (MS specialist) said, based on her neurological exam of me, that "It looks, smells, sounds, and tastes like MS" but, basically, without a positive MRI, no diagnosis, and hence, no DMD.

What she did prescribe was 1 gm/month of Solumedrol.  The nurse was supposed to come to the house today to do another infusion, but they never delivered the medicine.  I dug out the paperwork to find her phone number so she didn't have a wasted trip, and found the billing paperwork.  It said, "Primary diagnosis: MS" and "34 y.o female with history of MS."

So basically, as far as my medical records are concerned (which are relevant to getting long term care insurance, additional life insurance, etc.,) I have a diagnosis of MS??  But as far as treatment of the underlying disease, I don't?  I feel like I've been told, my sx are good enough for an insurance dx that will seriously impact future insurance-type decisions, but not good enough to dx and get treatment.

What does this mean?  Over the years I've had other dr's write down a "diagnosis" so insurance will pay for the visits, but it's usually something like "parasthesia" or something describing the sx.  So why would she give  a dx of MS without telling me?  She made it very clear to me that she wouldn't give me a dx of MS w/o a positive MRI, but I guess for insurance it's good enough??

Does anyone else find this odd?

Stephanie

[steph74]

Thanks, Lulu.  I definitely don't have CIS.  I've had several (3 for sure) relapses/exacerbations/whatever over the last 7 years.  My neuro exam shows deficits in several parts of my CNS (brainstem, c-spine, I'm forgetting the others).  Not all sx started at the same time (e.g. each exacerbation, while having a worsening of old sx, also had new ones).  So I'm "disseminated in space and time."

The issue is really the currently negative MRIs.  I know there's nothing else to do at this point except have the 3T MRI.  If it's negative, too...  I don't know.  I'll just throw my hands in the air, I guess!

I guess when I call the neuro to schedule the MRI I'll ask about the "dx" on my rx for monthly Solumedrol.

So I guess the question is really, "what does it mean to be dx'ed?"  Is it treatment?  Is it the doctor telling you?  Is it insurance thinking you have it?  Is it being convinced of it yourself?

Not necessarily a medical question, but more of an opinion question.

[Lulu54]

Your frustration is well justified.  Either this doctor needs to treat you for the MS or it needs to be removed from your insurance record.  Clinically Isolated Syndrome (CIS) does qualify you for the use of DMD's.  The FDA has approved several drugs to be used at these first signs of MS.  I would research that and make the argument you want to start treatment soon.

stay in touch,
Lulu

[steph74]

It's funny, but the way I read the McDonald criteria, I already DO fit for a dx, given the distribution of my sx in time and space (and observable "clinical" lesions by doctor).

I feel pretty crappy about this.  One week I think there's really no other explanation for my sx and that I must have it, another week I think there must be something else going on...  At least through all that I felt like the doctors simply didn't think there was enough evidence to make a dx yet, so I *had* to wait and see.  Now to see a "dx" in black and white, with no explanation as to what it does or does not mean, is really frustrating.

[HVAC]

I ended up in a similar boat for two years. I was of told by many Neurologists I had MS but it was not full blown. I had lesions on an MRI in 2007, and new ones on  two other MRIs over two years. With tons of blood work everything was ruled out, but MS. For me it took a positive LP in March for the DX and DMD.

I guess it is meeting the McDonald Criteria.

Alex

[steph74]

Thanks, ess.  I am in Northern VA, near DC.  At my last visit with my neuro she said she'd order a 3T MRI "top to bottom" (brain and full spine).  I'm going to have that done some time in the next month or so.  She said if it doesn't show anytihng, then I should go for a second opinion.  I've been thinking about where I'll go if I get to that point.  Hopkins was definitely one I was thinking about, but I guess I'll look more into that after the 3T.

[essdipity]

PS-------

I see you are in Virginia. Any chance you could check with UVA?  How close are you to DC? There are a lot of opportunities there, including NIH. In Baltimore there is Hopkins and the U of MD hospital.

Hang in there.

ess

[essdipity]

In a nutshell, you are completely right. This is a maddening situation.

I'm sure you know that a small minorithy (5%?) of MS patients are diagnosed without obvious MRI lesions. Also, and even more important, in the recent past, 100% of MS was diagnosed this way, because MRIs didn't exist.

Your doctor does not have the courage of her convictions, or confidence in her ability to make a clinical diagnosis. Meanwhile, you bear the insurance consequences of having MS but are denied all treatment except for symptom relief once a month.

This is a no-win deal. I strongly urge you to take you situation elsewhere, particularly to a cutting-edge, researched-based MS facility where they should at least try to find you a diagnosis without your just waiting for serious disability to strike.

I send best wishes and moral support. I wish I could do more.

ess