Most likely not MS, new mimic for you

[ch81]

I wanted to pass on an update as it might help others out there!

I finally saw a new neuro at a major university neurology unit. He was very young (compared to the 65+ other neuros I've had), intelligent, and helpful. He spent a good 20 minutes going over my history and asking questions and looking at old MRI scans. He literally walked me through some of my slides! He seems to think the neuro/radiologist who thought I had 2 lesions was reading it wrong. Infact, he thinks I never had lesions. Initially the rad said it was normal, but only after prodding from neuro did he change to 2 small lesions. What they said was a lesion might be vein, he said if they called that a lesion, they had to call about 10 other spots lesions, because they all looked the same. He is sending all of my films to his radiologist just to get another look. But said that we really couldn't count those in the mean time, or that it wouldnt be prudent to consider something so up in the air. Which means 2 years of clean LPs, MRIs, Evoked Potentials, etc... meaning really really slim chance of MS.

But he did say there is something wrong. While doing the physical exam he noted the ankle clonus, increased muscle tone and spasticity in right leg, intense reflexes, and even a funny reflex in my jaw. He says definitely something with CNS.  And now is looking into hereditary spastic paraparesis. I have no family history that we know of, but who knows. It explains all the symptoms, but is a little off with the episodic nature  of mine. So now we see if my insurance will pay for genetic testing...

Overall, I feel good. Maybe its the "I feel physically good, so I'm okay with being in no mans land". All I know is, there might be an answer in the future! And it isn't that "its in my head, just forget about it" like the last neuro said.

[Karen99]

Thanks for the update.  I am so glad that your neurologist listens, looks and thinks (as Quix pointed out)   You found a keeper.  

[Quixotic1]

Sort of Limboland; Nutsville

and

Limboland with Validation

[Quixotic1]

I think there really are two stages of Limbo.  the first is when we know there is something wrong, but can't get anyone to listen.  The worst is when we get told or implied that we are head cases.  This is the place that drives us crazy, when we weren't in the first place.

The second is a much safer place to be for our mental health.  That is when we find a doc who actually LISTENS to what we have to say, LOOKS carefully at us and at our data, and who THINKS hard about the problem.  That's when we know we are in good hands.  It feels okay to wait then, someone has taken our side and is running the offense.  (okay, okay, I did watch football today..)

I'm glad to hear about your visit.  Younger doctors remember the zebras better than the older docs and are quicker to think about them.  That's okay.  He problably knows more about the more common stuff, too.  You;re right, the chance that this is MS is truly slim.  But it IS something, and he knows it.

Good to hear from you!

Quix

[ch81]

Thanks! After 2 years, I'm realizing I shouldn't get wrapped up in "it could be"s. That just isn't healthy. I think I'm just glad this guy affirmed that "you're not crazy" feeling. Thank goodness. Now the waiting for results begins again.

[Lulu54]

Sorry, but this has to make me stop and go "hmmmm."  I went and did a quick look at spastic paraperisis, and it sounds too far out there.  This is an extremely rare disease ....

I'm no doctor but it just doesn't feel like the right fit.  I'll stay tuned for the next update.

I'm glad you have validation that this is not in your head.  And hopefully your insurance will go for the genetic testing so you can have firm answers.

my best to you,
Lulu