My Neurologist's Report

[anon07072023]

Hi,

I was able to get my hot little hands on a copy of my neurologist's report from my appt at the Rocky Mtn MS Center about 3 wks ago.

This is part of what he wrote:
From optic neuritis:  Afferent pupillary defect (APD) grade 3 on right and grade 2 on left. Pale optic discs were noted (yet, somehow my previous neurologist doubts that I actually had it).

Paratonia in all 4 limbs (I still need to look this up to find out more info about what it actually means).

Increased weakness of left hip flexor, knee flexion and extension, and ankle plantar flexion and dorsiflexion.

Brisk/excessive reflexes in the bilateral patellar, and decreased (1+) reflexes in bilateral Achilles (could this eventually bring about footdrop??). And Romberg sign was positive.

Six T2 hyperintense lesions – 4 of which are periventricular. One infratentorial lesion in the left middle cerebellar peduncle, and three T1 black holes. (I'm not very familiar with black holes, so I guess it's another thing that I'll have to research).
1 lesion between C4-6 and 1 lesion between T9-10.

He said he's holding off on the label of MS until all my labs come back. And stated that I'm somewhat similar to neuromyelitis optica, but my course has not been as aggressive as that usually plays out. Also, my test was negative for it. He also mentioned starting me on Copaxone when I come back in on Sept 8th. And possibly considering having me take Rituximab to address treating both - multiple sclerosis and neuromyelitis optica. (Has anyone ever taken this 2nd medication???)

Thanks everyone,
Kelly

[Quixotic1]

I am so pleased at the thoroughness of the RMMSC.  that is a place we can refer others to.

You seem to have an awful lot of brain lesions to have NMO.  

Rituxan gets discussed occasionally, but I don't know much about it.

quix

[RedFlame]

You have already been given wonderful advice.  Everything that has to do with neuro stuff goes very slow.  I was just telling someone else, try to engage in something else to help you get through this.  I study, do research and write to help pass the time.

Hope that helps

Red

[anon07072023]

Thanks Lulu. I am trying to be patient - only 2 more wks until I see him again.
Then hopefully he will have the answers for me. I do believe that he really will. Finally, a doctor I can have faith in.

Not to sound odd or morbid, but it's nice to know that you have black holes in your brain, too. Ha ha, I'm still not sure how that sounds....
But, you sound like you're still together...so there is hope for me.

Thanks,
Kelly

[Lulu54]

Kelly,
It sure sounds like RMMS Center was the best spot for you to land -  I am very impressed with t he details in your report.  It sure sounds like MS to me and I'm sure to everyone else.

One thing that is strange about starting DMDs is they are so different than other drugs.   If we have an infection, we start antibiotics immediately.  If we have cancer, we start treatment as soon as possible.

If we have MS, we can string this start date out quite a lengthy time until we have all the positive signs confirmed.  Little to no harm is done by waiting - I file this in the category of neurological time, which goes very slowly.

Remeber the DMDs don't work immediately, either.  they take several months and up to a year or so to really kick in and do their thing.

I also have black holes - these are spots where there is axonal loss/death of the axons.  some literature says these are not permanent, but others say it is.  Either way, at first it bothered me and then I found all the information about brain plasticity and can only hope my brain has rewired itself around all those caverns in my head  !

The brain and spinal lesions give your neuro tons of information - all are classic MS signs.  

Be patient - September is not that far off.  In the meantime keep learning all you can so when you return to discussions with the neuro you can ask informed questions and not be surprised by some of the information that you will be presented with.

be well, Lulu

[anon07072023]

Thanks guys. I looked up Rituximab and it sounds kind of scary. I don't think I want that on my list of things to take. But I'm definitely going to start taking Copaxone. Although, I hear I have to watch out for veins (does that include spider veins??) when injecting.

And I did a little bit of reading on black holes. Those are kind of scary, too. It said something about loss of myelin and axons in an area - permanently. And that it's usually a progressive sign of MS.

I just wonder where this road is leading me. I guess none of us know for sure where it's going to take us.  I'm doing OK for now.

Thanks for everything  :-)

[twopack]

This certainly sounds like some classic MS findings.  Many a neuro's dream!  I can understand the statement about waiting on all the tests that rule out the mimics though.  Since there is no one specific test for MS, it is considered a diagnosis of exclusion.  If you haven't really excluded, it's hard to play by the rules.

I am glad there is talk about treatment.  I think I'd be tempted to tell him you want to get that Copaxone ball rolling sooner rather than later.  It takes a couple of weeks to get it set up.  You would have your results in plenty of time to cancel if it turned out to be countraindicated.

Sorry, I'm not familiar with Rituximab.

How are you doing with all this information?  Have you felt the full impact yet?  Hang in there and let us know how we can help.

Mary

[tonyad]

   Hi Kelly :)

     Ok, for starters...Good for you getting "your" records!
The definition of Paratonia or gegenhalten is classified as a form of hypertonia with an involuntary variable resistance (i.e reduced ability of a muscle to stretch) during passive movement (i.e a movement without effort).  (this definition came from wikipedia).

    “Black holes,” which are areas of permanent axonal damage. These are called hypointense lesions, meaning that they display as dark areas on the MRI image.
(info came from msabout.com).

     It certainly sounds like you are going to have an MS dx very, very soon!  I cannot understand why the Neuro has not called you in before now to get the ball rolling!  

   Here is the link to the Rituximab http://www.rituxan.com/  You will probably have to copy and paste this :)   I would certainly question this medication though.  Never heard of it in treating MS BUT...I could be wrong. Some please correct me if I am wrong and you have heard otherwise.

Take Care, Please keep us updated when you have your appt.
~Tonya