Tuesday, January 11, 2011

OOOOoooooh weeeee

WHAT UP WITH ME?
Yesterday the Johnster and I rolled it on up to the Baylor Clinic. We noticed so many similarities to Mayo Clinic in regards to the decor, the e-chart, the doctors wearing all fancy clothes, etc. I would like to change it to "Baylo Clinic". Now, I have quite the file at Baylo Clinic, thanks to my whacked out zonules in my eyeballs. So I have an "in" there. Why I haven't just been seeing all the doctors in that system, I'll never know. But I have now seen basically the entire Baylor Eye Clinic, the Parkinsons Disease and Movement Disorders Clinic and now, Rheumatology! The Rheumatology clinic is my new favorite place to be in the medical center in Houston. Dr. Bhanusali gets 2 lax finger joints waaaay back (= good rating) from me!!! LOVE her.
She's super smart and informal- a GREAT combo!
Here's how it went down:
Me: "I'm a mom of a 4 year old who basically can't walk and do what I need to do for over half a year. I've been having pain since Oct. 2009!! I can't eat cheese anymore! I've had 9 eye surgeries!!!!! WAAAAAHHHHH!"
Dr. B: "That just sucks."---NO KIDDING SHE SAID THAT VERBATIM!!!
I liked her immediately.
She has several theories. She is the first doc to actually have valid theories- meaning I've ended up in the right place which she verbally confirmed by saying, "Rheumatologists deal with the weird diseases. And you are even weird for us. BUt we cannot leave you like this!"
Theory of the first:
1). My hip wants to dislocate due to the connective tissue disease (still not named) but can't, so it just gets crazy inflamed- yowza pain!- thus causing muscle spasms, ergo affecting nerves in surrounding areas. The hip dislocated back in '94 during drill team tryouts when I did the splits and then I got up and kicked my own face. One of my favorite stories to share.
2). I might still have Ehlers Danlos - a type of connective tissue disease that has many types. I have to go get a different gene tested in HOUSTON to figure it out. This will probably take months, but she still wants this done. This disease affects the joints and whatnot. She isn't happy with my connective tissue disorder being: "not otherwise specified"
3). I might have a form of Lupus due to my ANA bloodwork being positive. This doesn't mean I have the systemic Lupus you hear about, no but more of the weirder forms (duh) that mess up connective tissue. She ran more bloodwork yesterday to get that looked at.
4). I get a catscan of the hip next week - Wed. Just throwing that in, not really theorizing there.
5). I'm actually a real "weirdo" a la Gonzo in the Muppets.

Needless to say, Dr. B is on the case!!! I'm so thankful that I was referred to her by Dr. Shahed (neuro genius). Oh and I got a whole new medicine regimen to in the meantime treat the symptoms which by the way, is all you can do with any of those above theories. Manage it. Who cares! I'll take managing over living in pain all day any day, right!? I was overjoyed with how well the appt went yesterday. Plus, I got a Reeses buttercup, could you ask for more? Well, you could, but lunch was too far off.

So I go back to Dr. B in 3 weeks after the medicine regimen has been in action. I have a feeling with the right mix of anti-inflam and muscle relaxers I could be a pain-free walker here real soon!!! Praise the Lord from whom all blessings flow!

5 comments:

Jon said...

I still say lupus is extremely unlikely. you dont have any of the telltale signs from what I can see. Also lupus arthritis and myalgias are supposed to be more mild than standard varieties, and yours is quite severe. Like I said the ANA test is unreliable. Im certain your rheumatologist will come to the same conclusion. But on the plus side you should be feeling much better quite soon. And I hope we have learned a valuable lesson from this experience: Baylor College of Medicine is awesome, and Mayo Clinic is highly overrated.

Jessica said...

Hi Gillian. My friend Leslie gave me your blog. I'm sorry that you're struggling so much right now, but I must say, sounds like you're doing it with grace. :)

I'm not smart enough to figure out how to message privately on here..ha...so I'll just leave it here and keep it as short as possible.

My best advice that you didn't ask for is to get copies of ALL of your records. Get CDs of all of your MRI&CTs w/reports and read and review everything. "Incidental findings" are not always passed on to patients, and it might open a door if you haven't tried this already. I have more to post, but it doesn't seem right (about EDS and related conditions) in this location. Feel free to contact me if you want to chat. I'd be glad to email with you since Leslie said you weren't crazy. ;) No pressure to contact me if you don't like chatting with internet strangers. haha!

I'll be praying for answers for you and your family.

Ali said...

You have the font of sweet relief and it reads so good! I am so glad you are encouraged!

Lesly said...

I'm so thankful for this Doc! And you always make me laugh! I love you friend!

joyce said...

Prayin' ya up!!!!

BTW...the "word verification" for my comment is "ingrant".

I think this means: in(prayer) (God)grants you peace!

Sending love & smiles your way!