UTSW MS Center - the first visit

[jensequitur]

Just had a wonderful first exam and visit with one of the doctors at the UTSW Multiple Sclerosis center.  We talked about lots of things...  

I have never been tested for lupus, Sjogren's, Reynauds, or any of the other auto-immune diseases, so we're going to check all that out.  My vitamin levels have never been checked, either.  I know I have vitiligo - a benign auto-immune disease of the melanin in the skin.  It follows the trigeminal nerve of the face.

My MRI doesn't show a heavy lesion load in the brain, although I do have some humdingers - the corpus callosum and the pons being two of them. She mentioned that there's a segment of people with MS who don't have a heavy lesion load, but still have symptoms - gray matter lesions may be to blame.  At this point there's no patient testing available, but since this is a research facility, I may get a chance to have it checked out in the future.

Also they have optical coherence tomography - something I've been curious about but have not gotten the chance to see it in action.  We're going to scan my eyeballs and see what the optic nerve looks like.  This is a great way of checking atrophy.

I'm also getting my hearing checked in the left ear - some notable deficits in that ear, although conversation is still perfectly audible.

So all in all, a very comprehensive exam, questions answered, and some interesting tests scheduled for the future.

One thing I really liked about this neurologist was her attitude about things 'we can't do anything about.'  I mentioned that I was concerned about atrophy, but I wasn't sure what we could do about it.  Her response was that while we may not be able to do anything about it now, it'll give us a baseline for the future, and we may be able to do something about it at some point.

[jensequitur]

Actually, she asked if I had insomnia - which I do on occasion.  I get into bed and it feels like I'm wide awake.  Fortunately this only happens once a month or so.  I also talked about my back pain after a few hours in bed.  Last night I took a couple of Flexaril as well as my nightly dosage of Baclofen, and slept quite nicely.  

[Lulu54]

It makes my heart soar to hear about these types of visits.  I'm so glad you had a positive one today.  BTW  - did you talk about the sleep problem?  I'm thinking earlier today I wrote to you about sleep and the lack of it..

Congrats on connecting with a good doctor and facility.

hugs, Lulu

[jensequitur]

When I was having my first real flare, I had my blood drawn to check for heavy metal poisoning, syphilis, all the typical checks made when you first start exhibiting neurological symptoms.  But my first neurologist followed by the book - one clinically definite lesion in the cerebellum, intratentorial, which means I needed a positive LP to have a diagnosis.  With the positive LP, I was slotted into a hole and basically told "Well, that's MS."  We haven't talked about anything else that might also be a problem.  She commented on my extremely cold hands and feet, and asked if I had Reynaud's.

I'm pretty sure I have MS - I have lesions in the brain which are in a classic configuration for MS, and lesions in the spine.  Oh, the neurologist looked at my MRI with me!  She told me that it's perfectly all right to look at your MRIs, btw.  She pointed out the lesion in the corpus callosum, which was perpendicular to the vascular space (dawson's finger) and classic shape for MS.  She also commented on the 'chewed' appearance of the corpus callosum in the CSF space above the pons.

[Audrey_M]

Glad to hear you had such a positive impression today and sending my best wishes that it only continues to be more fruitful.

I was really surprised in reading your post about all of the tests that had not been done. MS is supposed to be a diagnosis of exclusion and there are so many key tests that have not been done yet for/on you.

Don't know if it will change things or not for you, but at least they will be run. It's really important to know if you have comorbid conditions so that all are treated appropriately.

Hope it continues to go swimmingly well for you with this new group! Doesn't it feel good to walk into an office an be taken seriously?

Hugs,

Audrey

[wiggles94]

That's the second posting I read today where someone had a great visit with their doc.  So good to hear.  

Glad it went well for you. I recently read about the optical coherence tomography.  Let us know how that goes!