confused about reports

[Evalucia]

I am still in limboland. I guess with only brain MRI lesions to show I do not meet the criteria.  I just the medical records that I requested from my neuro.  All of the tests except for the MRI and high Igm levels on my blood panel, everything else has checked out as normal.  The very first neuro I went to found nystagmus and brisk reflexes on his neuro exam but my current neuro did not notice any deficits on my neuro exam.  He does note that I do not seem to be stressed out or be suffering from any psychological issue so I guess he is not attributing my symptoms to any psychological cause.  He has not told me that I have MS yet; however, on the impression section of his report he notes; MS "improved", demylineating disease "improved" ...........does this mean it is MS?

Right now I am dealing with the fact that my legs get fatigued faster now and I have been having intermittent twitches of the fingers and toes, very slight twinges.  The twitches are new symptoms for me, my last brain MRI did not show increase in lesion nor enhancement.  Would this count as a flare-up?  If so, do neuros count the patient's reported symptoms as a way of meeting the criteria or do I have to wait for some other abnormality to show?

[Evalucia]

LOL It takes a heck of a lot more than that to offend me.

It will be LIRR for me, nice and relaxing ride.  I will definitely give them a call.  I am going to wait until I have my cognitive test first so that I can go to him with the whole medical story.

[kwarendorf]

At the risk of offending...

Sadiq = God :-) well worth braving the L.I.E. or LIRR.

Kyle

[Evalucia]

that fee is not bad at all considering what these doctors charge for a 30 minute not so thorough consultation. (you should see what we charge lol)  I will definitely check him out.  

It may be worth the trip to the city

Thanks so much Kyle,

[kwarendorf]

My doc is amazing bed side manner wise speakin' :-) After my first visit my GF was thinking about leaving me for him.

He doesn't come cheap however. He does not take insurance for the first consultation. It costs $1,000. For that you get two visits about 6 weeks apart. My first visit lasted 3 hours and the second 2 hours. During the first visit you review existing tests, discuss medical history and have a thorough exam. During the second visit you map out a game plan. At the end of the first visit my GF gave him a great big hug :-)

Once you pay for the first consult his office then submits insurance claims for you. They bill you for the difference between what the insurance pays and their charges. It's not usually too bad. If you want to read more about the practice go here: http://www.imsmp.org .

Kyle

[Evalucia]

I have been having "flare ups" for years now.  The worse episode was this past July which was what sent me to go ahead and have the MRI done.  That is when my first neuro noticed the lesions, and also the neurological issues such as the nystagmus and the brisk reflexes.  He had referred me to Stony Brook MS center but they did not take my insurance.  Then I found South Shore Neurologic and they do specialize in MS and this doctor sent me for the whole batteries of tests.  When I went to him all my symptoms were "quiet".  I just went to him for the sake of following up.  We did brain MRI with contrast which showed no enhancing lesions.  This MRI was repeated a couple of weeks ago and it showed no new or enhancing lesions (contrast was used as well).  Cervical and thoracic MRIs were normal.

I work for neurosurgeons, but when my boss writes a diagnosis on the impression section is because that is the dx that he is giving the patient.  

But I do not know whether this doctor is writing MS because that is what his final dx is.  We have not discussed DMD.  I have a cognitive test scheduled for June and I am waiting to get that done in order to see him again.

Kyle, how is your doctor's bedside manner? I am thinking about making an appointment with him (even though I HATE traveling to NYC) I would make an effort if it means getting a clearer picture.

[kwarendorf]

Hiya -trying to figure all this stuff out while dealing with symptoms is no box of chocolates.

The only way for you to find out what current neuro is thinking is to ask him. Trying to decipher med speak from reports requires advanced degrees in cryptography.

You have brain lesion(s). If they are in different parts of your brain you meet the dissemination in space criteria. Without MRI's from different times, or an MRI w/contrast that shows some enhancing and some non-enhancing lesions, it's tough to pass the dissemination in time criteria.

With brisk reflexes and nystagmus, it would seem you have clinical evidence. To qualify as separate relapses there should be a thirty day period between "episodes". This means that current symptoms quieted down and it's 30 days before they reappear or new symptoms pop-up.

Wading through this requires a lot of patience. Keep asking questions and keep us posted!

Kyle