View Full Version : Appointments at UC SF

04-21-2010, 09:43 PM
Hi Everyone,
I've been missing for a bit because I've had to make two more trips to San Francisco over the past week, and I'm exhausted.
We got back from SF late yesterday evening, and Iím recovering today.
I had my Botox injection into the vocal chords on Friday, so now I'm speaking in a whisper for a while. Once the chords loosen up a bit, my voice will get back to almost normal.
Yesterday I saw the top-notch neurologist that my local neuro wanted me to see. Heís convinced that my problems are Central Nervous System, but heís sort of baffled by it. He gave me a very thorough exam and went through all of the records and tests from the Houston hospital that I brought with me. Heís going to get back with my neuro in Salinas, but he does suggest that I have a spinal tap, since thatís the one test that I havenít had. I think that Iím going to suggest that small-nerve biopsy that they were talking about at the conference first. He urged me to try the Baclofen that my neuro had prescribed, so I tried it last night. I slept soundly until 9:30 this morning! My leg does feel a little less spastic, but I feel like I have a heck of a hangover. Since it helped, I might try Ĺ of a pill next.
I checked in with the Sjogrenís Clinic after the neuro appointment. They had two cancellations that day and they were all set up for testing, so they grabbed me joyfully. I was impressed with the thorough work-up that I got. The rheumatologist was wonderful. She agrees with what Iíve been thinking that my genetic background and family history have a lot to do with what I have. She also agrees that I should educate my girls and that they need to keep a close watch out for symptoms of SJS, especially Kayla, with her asthma and IBS. My eye test showed that the Restasis is really helping, but my left eye is still a little dry. The saliva test showed that Iím just barely low, but Dr. Wu did prescribe some Evoxac for me to try.
I also had the lip biopsy done. It really wasnít bad at all. Jeff got there to pick me up in time to watch, so we both got to see some of my salivary glands. They look like pomegranate seeds. She put in one stitch, and I was careful to use the ice pack. We stopped at a nice Italian place that I had found, and I had minestrone soup and polenta, so I didnít have too much trouble eating. The stitch came out this morning, and now it just feels like Iíve bitten my lip and itís healing. Iím not having any of the lasting numbness that others have complained of, and my lips felt normal this morning. Iím cooking home-made chicken noodle soup today Ė nothing too crisp or chewy for me for a couple of days!
I should get some results in 4 to 6 weeks, so Iím anxious to hear their conclusions. The question seems to be whether my doc back in Texas was right, and I have Mixed Connective Tissue Disease, or if it is Primary Sjogrenís. At least weíre narrowing it down.
I have felt pretty tired, sore, druggy and miserable all day today, so I've done a lot of vegging. I'll get back to my Sjogren's conference reviews tomorrow, and I'll try to get caught up with everything that is going on.
I hope that everyone else is feeling good today.

04-23-2010, 11:56 AM
Hi Marla;
First, I am so happy that you enjoyed your trip to San Francisco. I am especially happy that you have found doctors who are pro-active and are interested in resolving your issues.
BACLOFEN.............I AM IN LOVE WITH THIS DRUG!!:yes: I take 10mg/day 2xs per day for my FM!! The one at bedtime is the one that I love (LOL). I do hope that it continues to work for you!

Continue to rest and allow your body time to recuperate. Sending you hugs!!

Peace and Blessings

04-23-2010, 02:29 PM
Hi Saysusie,
You are just what I was looking for - someone with experience with Baclofen! I've always been afraid of taking meds that make me so groggy, and I've got a few questions.
Can it be addictive? Have you ever had hallucinations from it? Are you able to drink a glass of wine with your dinner while taking it? I'm missing that!
Thank you for being there with info!

04-26-2010, 10:07 AM
hi marla,

wow, you had a busy trip to SF....so glad you were able to get into the sjogren's clinic (i did not even realize that there such places). Yuk with the stitch in the lip...glad everything is healing ok.

I too amd interested in the Baclofen. Saysusie said she takes it for FM - is this fibromyalgia? I get confused by all of the abreviations that we all use.

Marla, i hope you are getting closer to a clear understanding of what is attacking your body.....