The Mayo Clinic, Take 2

I'm starting with this thought: God is SO good! Had to get that off my chest before the update. Okay, I spent all of last week at the Mayo Clinic (Jacksonville), and I must say it is amazing what a difference a department makes. Some of my tests are still pending (including the MS panel), so I do not have a diagnosis yet BUT, since someone else's post on here helped me decide to keep my appointment (the "to go or not to go" debate), I thought I'd report back on my experience.

I liked Dr. Shuster (their MS Neurologist) very, VERY much (bearing in mind it was only my initial visit) and found her to be wonderfully attentive and extremely thorough. Not only did she jot down notes, she read them back to me to make sure that she had it all right (and it is SO nice to know that someone really is listening, isn't it? Particularly after such a disappointing visit to the Gastro there in January.

She ordered a bunch of tests (including the dreaded spinal tap) and also sent me to see a Neurological Ophthalmologist and a Rheumatologist there for a consult. The Neuro/Opth said that I had a convergence insufficiency (my eyeballs are out of alignment) which was causing my vision problems (feels like I'm wearing one contact lens) and was also making the disequilibrium (dizziness) worse. Said it was likely brought on by the underlying neurological condition and would probably correct itself once the condition was treated; the trick is, of course, actually identifying said underlying condition. He also said that my optic nerves did not show any sign of damage, although one was elevated and one had slight thinning, but was quick to point out that a lack of damage did not necessarily rule out MS (points for him ;o) Rheumatologist ruled out Vasculitis via bloodwork and exam (whew) but noted that I did have some Livedo on my arms and legs but it wasn't anything to worry about.

So thus far, we have ruled out Lupus, Lyme, Vasculitis, B12, Dermatmyositis recurrence, Thyroid, and a few more things which I cannot for the life of me remember ('cause I'm having another one of them mental moments here ;o) I did have a positive Babinski in both feet. I can also say with absolute certainty that if I ever have another lumbar puncture, I'm making a beeline for Mayo's Neurology Dept. because the nurse that did it was just brilliant (barely felt it). They have 2 nurses that do them "all day long". A gastric emptying test is scheduled for next month to check for gastroparesis and I'm having a VEP done also.

Anyhoo, now we're just waiting for the remaining test results to come in sometime this week but I thought I would post this in case anyone out there was contemplating more intensive medical testing but "hold the Mayo" *grin* (it was like night and day compared to the last trip). Sorry this is a bit long (I've been saving up :o)  

[MsmsinFl]

I'm SO glad your experience was as good as mine with Dr Shuster!  Since I'm the one who urged you to keep your appt with her, I'm very happy it went well.

Even if you don't end up with definitive answers, at least you'll know they looked at all possibilities, and dismissed nothing.

Keep us updated!

[JenEpicFarms]

I'm awfully glad you did - and thanks again! I must admit, that my biggest fear is that the remaining tests will come back "fine" and I'll be stuck this way in perpituity :oP  

I've already hung up the car keys, as my vision is too whacked out to drive safely  (and thank the good Lord that I work at my daughter's high school or I'd be in BIG trouble). Getting through the day has become a very interesting challenge (particularly navigating the hallways) so I really hope for something helpful to happen soon.

I'm hoping, though, that since Babinski's sign is present on both sides she will not just "quit" on me (she did tell me that with my history - BC at 40 and Dermatomyositis at 42 - she was planning on keeping me on a very short leash :o) Guess I'll know more soon!

[ack65]

Yeah!  It sounds like a great start to figuring it all out.  I can only pray my follow up appt will go so well.  I was thinking about you all week as I hadn't seen you post but I guess you were busy in Mayo land.  Keep us posted of your results.  It is encouraging for those of us in limbo to see that persistence pays off.  Anna

[JenEpicFarms]

Thank you Anna! I didn't actually want to post that I was leaving for Mayo (because what idiot tells the world they'll be going out of town for a week?) I am cautiously optimistic that I will actually get somewhere this time, but the jury's still out *grin*.

I sure hope all goes well for you on your follow up!

- Jen

[michelleric]

I am glad you had a good appt. Sounds like you found a good neuro.  I hope you get some answers soon.
Michelle

[JenEpicFarms]

Thank you Michelle - I do too :o)