what is wrong with this situation???

[Joiedecour]

patient gets referred to ms specialist, for sx and non-specific white matter changes, patient is "followed", while being "followed" patient develops optic neuritis, a year later optic neuritis is revealed to have caused permanent damage in optic nerve, conclusion reached is that white matter changes are "incidental," that other symptoms don't correlate with mri, and so don't really exist, that mri is more sensitive than clinical, so patient will wait a year for more imaging, and more "following."

something seems kind of circular to me in that thinking........or is it just me? and I had to wait for a month after opth. appt. to get any kind of feedback from neuro's office. Vent, vent, vent : ) thank you for listening : )

[HVAC]

Then there was the Polish Neurologist. He did a neurological exam. In a sing song voice he said you have one of two things that will kill you. We can't do anything to save you. One AVM an Aneurysm. You will be walking along and bam you are dead. Or a malformation of the brain stem. They will be operating on you tilt your head back to tube you and you are brain dead. I am not sure which will kill you but I want to do a MRI to see which it is.

Then he called me on the phone and said I hate giving these call backs with bad news. You have MS. You need a lumbar puncture. I am leaving my practice so you need to get your records. I said what do I do look up LP in the yellow pages. He said they will give you a card with the name of a neurologist. I said what about the other conditions which could kill me. You do not have them just MS. It took me two more years to get diagnosed.

Alex

[Joiedecour]

You were told you had air pockets in your brain, Alex?!!! That's funny. I should maybe ask if that's what's going on with me, maybe I'm a just a bubble-wrap head LOL.
Thanks, Aspentoo. How very interesting that you were told the same thing about LP initially. The waiting is indeed awful, and it gets stretched out from one vague appt and or test to another.

[aspen2]

I am right where you are.  Perhaps a bit farther along. I had the same speech ("even if the LP is positive, it would not be enough for a diagnosis").

Last time I saw my neuro, he said it was now time for an LP.  I reminded him about what he had said earlier, and this time he replied, "Based on your exam, and DESPITE the fact that your mri isn't textbook, if you have o-bands, I will start treating you."

The waiting is awful.  I decided to stick with my neurologist because he's a really nice guy, and when you switch, then tend to start you from the beginning again.  I just couldn't stomach that :P.

Anyway, I understand, totally.  I'm sorry.  So not fun.

[HVAC]

Jodi,
  May be it is time for a new Neurologist. I would be ticked. I had all the test results showing MS and permanent damage it took my MS Specialist a year to finally say yes it was MS. I met the McDonald Criteria. I was told you will be diagnosed with MS at some point by 4 neurologists but no one would call it. It is so crazy.

I went to one neurologist who was testing me for MS and having all the tests point to MS swear I did not have it. Luckily I complained to my GP and she found me a MS Specialist.

If it is a dead end go somewhere else. It all comes down to the neurologist making the diagnosis and they can take years.

I probably win the prize. I had my first attack in 1965 was sent to the Mayo and was not diagnosed until 2009. My favorite was when I was 15 I was told I had air pockets in my brain and signals could not get across.

Someday neurologist are going to laugh at the MS diagnosing process of today.

Keep the faith.

Alex

[Joiedecour]

Thanks, Karry and Corrie,. Karry, none of the brain mri lesions, other than optic nerve, are in McDonald criteria areas. I have not had an enhancing lesion, but I have had 4 new T2 "lesions."

Corrie, I asked about LP, and was told that even if it were positive, I wouldn't be treated based on mri. It's a good idea to remind me to call in new sx. I'll do that. I also expressed fear about vision, but that fell on deaf ears.

I can see where they're coming from too, since there are criteria which they have to follow. What really bugs me is the suggestion that the brain hyperintensities are incidental. What are the chances of going to a neuro with neuro sx, getting a brain mri with changes, THEN developing ON? And then having the ON and white spots not be related? It just doesn't make sense to me.

[Corriel]

Hi Jodi, it seems like folks are chasing their tails a bit to me. Can you call and let them know that you are concerned about continuing to wait given that you have permanent damage already from an episode of ON?

Since most symptoms of MS do not necessarily correlate with what is seen on MRI, have they offered any other diagnostic tests like a lumbar puncture?

One thing to note too is that if you are experiencing any new symptoms then make sure they are aware, that may help to speed things up a bit.

I wish I had better advice to give, hang in there!!

Corrie

[karryon55]

Geez Jodi I see where you're coming from. So are any of your lesions other than optic nerve damage in one of the McDonald criteria areas?

It is so confusing that some easily get a dx but others struggle for so long. Have you had any new lesions or enhanced lesions since your first MRI ie trying to figure out the whole DIS and DIT thingy?

Hugs coming your way,

Karry.