My Trip To Mvp & Dysautonomia Center In Birmingham, Al

[Michelle F.]

[Moderator: I meant for my sub-heading to be my main heading, but I mistakenly made my name the main. Would you please correct? Thank you.]

It was a good and tiring day yesterday, but I wanted to share it with everyone.

Dr. Moore interpreted the TTT I had in June. I had an EKG and stress test on the treadmill yesterday, also. She said the TTT test definitely revealed NCS. The tests I had in her office did confirm MVP, but she believes my presyncope and syncope episodes are caused by my vagus nerve being irritated (I think that was the word). She prescribed Metoprolol to help with my drastic BP and HR changes.

She was also interested in the sleep study results that I took with me from my neuro's office last May. Last year I was told that I didn't have apnea, so I didn't "really" look at them back then like I should. Well, yesterday, Dr. Moore pointed out that the results showed "limb movements with associated arousals"; the Periodic Limb Movement (PLM) Index was 14.1. She said that she didn't know about the index number, but she pointed out that apparently my sleep is disturbed by the movements. (In reading about PLM this morning, I find that any index over 5.0 indicates Periodic Limb Movement Disorder (PLMD). There are ANS symptoms that seem to go right along with this. I believe I need a new neuro now, especially since one of his offices' specialities is sleep apnea studies. I cannot help but wonder why he didn't address this! The study's impression also says, "Sleep disturbance with hypersomnolence (780.54). Periodic limb movements (327.51). Sleep time (382.5) minutes. That's a lot of movements during that time!) She prescribed Klonopin to help calm my CNS while sleeping. Hmmmm Does Klonopin lower BP or HR? I don't want to do that while I am sleeping. I think she's on to something though! I should have been on to it myself before now, but I appreciate her seeing that.

She believes I can benefit from a trip to a rheumatologist, but wants me to wait until I have been on these meds for six weeks and she will re-check me. I agree with her methodically addressing one issue at a time.

Dr. Moore spent a great deal of time with me. It was conversation style with her being a great listener. She was kind and did not want me to leave without understanding everything possible. She was very helpful and she is the first doctor that I have seen who really knows about dysautonomias. She was a real person, as well as a doctor with information that she was very willing to share with me. I liked her. Her staff was kind and helpful, too. That goes a long way with me. I was at the office for 3 1/2 hours and with someone or doing a test for probably 3 hours of that time. Much of it was with the doctor herself.

Thanks for reading....and helping me so much a long the way!

Michelle F.

[firewatcher]

Good News Michelle!

I am so glad you had a good trip! My neuro prescribed Klonopin for me, but it has not affected my HR or BP. I am taking a tiny dose though, just .5mg a day split into two doses. It helps the headache, he was hoping it would help the tremor; Inderal helps the tremor, but does nothing for the headache. He also told me to use Klonopin 30 minutes before exercise to "pre-treat" the swelling and numbness that occurs in my hands and feet. I am glad you found a supportive Doc!

Jennifer

[summer]

Michelle,

So glad for you that everything went well and that you got so much information. Having a supportive doctor goes a long way!!

Summer

[Sunfish]

glad to hear that the appointment was a good experience for you!

melissa

p.s. the title's fixed too! (says i, the moderator-in-hiding as of late)

[Maxine]

Good to hear a good story----

Wishing continued great care with your doctors.

Maxine :0)

[momofsara]

Michelle, glad to hear of your positive impression of Dr. Moore. One thing I was wondering, did you make your own appt. or did your pcp make it for you? I'm still thinking about whether or not to ask her PCP to refer her to the MVP Center and Dr. Moore. Glad she was helpful to you and also had such a good manner about her and was willing to listen. Sending you the best---------Susan

[Michelle F.]

Thanks everyone.

Susan- Arranging this appointment was a little different. I gave the telephone number to my PCP and they let me know after two days they were having trouble getting through to the office. After one week without hearing from my PCP, I called the MVP Center (contact information on their website) and it gave me the option of waiting or emailing their office. I emailed them and asked if my PCP had gotten through to them. They called me and let me know they had not heard from my PCP. So, I made the appointment. When my PCP called to say they could not get them, I let them know I had made the appointment. They treated it as a referral and sent my records on to them. If I had it to do over, I would have just taken myself. I think they have many people take themselves to their offices, rather than being referred. I'm sure that's more than you expected or needed to hear.

[lorrie]

I'm so glad you had a positive experience...a doctor with good listening skills and knowledge to boot...wonderful!!!!