The importance of seeing an MS specialist

[brittkl]

So, I've been having problems for about two years now (nystagmus, eye pain, double vision, tingling, spasms, fatigue, trigeminal neuralgia [this was more recent]), but the neurologists I saw said I had no signs during the neuro work-up, and my MRI was clean.

Well.

I just saw an MS specialist at USF in Tampa, and he noted that I had hyperreflexia, dysmetria, a relative afferent pupillary defect, and signs of optic neuritis. Needless to say, I was like, YOU HAVE GOT TO BE KIDDING ME.

He did not want to diagnose me until I got an MRI with a 3T machine, a lumbar puncture, and an EEG, but he said it was highly likely I did have MS. All this after seeing TWO other neurologists and a neuro-ophthalmologist, none of whom gave me any answers and told me everything was fine. Nystagmus? Dry eye. Double vision? Need new glasses. Tingling? Vitamin deficiency. Oh, not to mention stress and anxiety.

I guess what I'm trying to say is that it's important to keep trying to find someone who can help you and listen to you, and someone who knows what he's talking about. I'm annoyed, but I'm also really grateful that I kept pursuing an answer. For those in limboland, KEEP TRUCKING.

[brittkl]

@aspentoo That's good. At least he's kind. I'm still sorry that you can't get a diagnosis. Clearly something is wrong, and I'm sorry people aren't willing to make a decision.


@Kyle That is so true. First neurologist I saw was awful, second one was better, but then she left. Third one's the charm, I guess?

[kwarendorf]

The right MS doc is indeed key. The first one I saw was a nightmare. The second is a gift from God :-)

As to MRI strength, MS is first and foremost a clinical diagnosis. MRIs are supporting evidence. All of my MRI done in conjuction owth my DX were on 1.5T machines.  

Once upon a time there were no MRIs, and yet they were still able to DX MS :-)

Kyle

[aspen2]

By the way, I also had trigeminal neuralgia ... for six weeks ... in 2013.  I'm so sorry you have this.  I would rather deliver 5 babies per day than experience this again.

[aspen2]

He knows my symptoms are real; not an issue.  (I couldn't possibly fake the issues with my hand now).  He's actually very kind -- and having experienced a bunch of pretty awful doctors during the rule-out process (who DID imply mental health issues on my part) I trust him.

He either KNOWS it isn't,  just doesn't know, or is still in waiting stage to have my mri a closer match to some textbook image in his head.  I wish he would be direct -- I feel like there is some psychological game involved :P.

I do wish we had 3T machines available -- that might make a difference.  I have spinal symptoms, but no "convincing" lesions.  However all the other spine/back related issues have been ruled out.  He is sending me now for a lumbar mri -- some of my symptoms to look like cauda equina syndrome.

I'm pretty sure he's going to retire before he figures this out to his satisfaction lol.

[brittkl]

I read your other post, by the way, and that doctor sounds like a jerk. I don't think people realize how awful it is to be told that you're making things up or imagining things. It makes you question your very perception of the world. It's also degrading and belittling.

[brittkl]

hahaha Keep that truck a-parking!

[aspen2]

Thanks from me too, although I will add the "right" ms specialist :).  Sigh.  I would like to park the truck :P.

[CheyTag]

Thank you :) xo