derekliz

I wanted to give you an update about my trip to The MVP/Dysautonomia Center in Birmingham on Tuesday the 13th of September. They performed an echocardiogram which showed mild MVP. The TILT Table test was also done and showed orthostatic hypotension. Once I get the report, I will post more detailed information if anyone wants it. Dr. Phillips was extremely thorough, understanding and reassuring. She kept me on Metoprolol for the palpitations (prescribed by my cardiologist), added Klonopin ½ of a .5mg pill in the evening for sleep. The medication will help me to enter the REM stage of sleep. And Lexapro ½ of a 10mg pill which I will be starting tomorrow. I have to return for a follow-up visit on November 4th then have follow up visits thereafter. I was very impressed with the testing and care that I received at that facility. Dr. Phillips felt that the fatigue, brain fog, lack of concentration were related to the POTS diagnosis and feels that will the correct medication, I should be able to lead a normal life. Adjustments may have to be made to the medication types/dosage. Time will tell

For tbose of you who listed the dr's that you see at Emory, are you still seeing them for treatment and would you recommend them? Thanks! Liz

So are you going to get the results Monday? Please let me know. The results. Did you yell Dr. parikh about your POTS? When. I mentioned it to him, he had no idea what it was. Told him there were no md's i.n GA for this and he said "what about Emory"? Told him....nope, no one there either. He looked at me like i am nuts. I hope your labs reflect what is going on with your parathyroid. Dr Parikh is strictly a "lab/numbers" guy , but a great surgeon. Make sure you read and possibly print that website I emailed you about Liz

What did he do today? I had to cancel my appt for tomorrow...bad migraine all day...still have it. Rescheduled for sept 13

I had to cancel my appointment for Bitrmingham tomorrow Woke up with a bad migrainre and have had it all day. There is no way i can do the testing feeling so bad. Rescheduled for the first available on 9/13/11

How did your appointment go today?

Thanks Firewatcher for the great advice. I have a binder (unfortunately) with all my records and notes so that goes with me to every doctors appointment. I get copies of EVERYTHING!!! I am looking forward to the appointment and some answers and to talking to a doctor that will believe that my symptoms are real. I will definately post after my appointment Liz

Pineapple always works for my daughter when she is constipated. Do you take papaya enzyme...that helps.with digestion. Good luck Liz

How much Carnitine and Co Q10 are you taking.....if you dont mind me asking? I am on those supplements but not sure of the correct amount to take daily? Who advises you on which supplements to take and the dosage? All of my hormone levels have been normal. thanks Liz

I have an appointment next Thursday with Dr. Phillips!

Sorry for the typos!! I am seeing Dr. Susan Phillips. Has anyone met with her?

I just scheduled my appoinment to go to Birmingham next Thursday at 830! Excited yet scared. Would love advice or suggestions! This is a great forum...Thanks!

Love the watch!! Would you mind sharing where you purchased it?

When i am lying in bed in the am, my pulse is 72 when i get up and moving, it is 112-120. In the evening after sitting for a while then walking up a flight of stairs, hy pulse is 89! Is that common? I drink lots water and gatorade from the moment i wake up but get up 3-4 times at nite to urinate...sometimes more....any thoughts? I have no bp changes uopn standing

I just left them a message to call me to schedule an appointment....hopefully it wont take too long to get seen. Is Dr. Watkins the "One" to see at the clinic? Do you ever get tingling in your legs? I primarily have it on and off in my right leg...knee down to ankle. Sometimes my left leg too. Wondering if I should make an appointment to see my neurologist locally or just wait for my appt. in Birmingham. Are there any other conditions that can cause elevated pulse when standing other than POTS? I have a nodule on my thyroid that is 6mm and they are doing a follow up ultrasound in 2 weeks to see if it has grown. I know that hyperthyroidism can cause tachycardia but would the tachycardia be present all the time or just upon standing?? I also have a ferritin level of 27 (in range but on the low end). Low ferritin can cause tachycardia upon exertion from what I have read........so much to learn.....wish the MD's knew more!

Wow...2 weeks...that is great! Did you schedule your own appt or did your md do it? I am actually 3 hours away but still close enough! I am calling tomorrow!!!! Right now i am not on any rx meds for tbis. My cardio prescribed florinef but i would.like to have all the testing done before taking any meds. How long was your appt and do you have to make follow up visits with them? I just looked and saw that they participate with my insurance.....happy about that! Has any vitamins/naturL treatments helped you? I hate meds because i always have side effects which now i am reading is very common with pots.

Approximately how long was it to get an appointment in Birmingham? I am alittle over an hour away from there so it is definately an option for me. I wish i could get some decent rest. I wake up every nite at 4am feeling that my heart is racing but when i take my pulse it is about 72 which is my normal rate for lying down....could this be anxiety? My BP is normal...not high and not low...is that a good sign?

Yes, I am thinking about the center in Birmingham. What kinds of tests did they do for you? I just looked up the ANSAR testing. This is all new to me so I printed out some info and will talk to my neurologist to see if she has any idea as to where I can have this done. I have not spoken to her since the "Possible" diagnosis. Hopefully she has some knowledge of POTS or can direct me to someone who does. I am just trying to complile a list of tests that I can give to my cardiologist. As of right now, he seems willing to help but I will know for sure when I see him again on Friday!

http://www.athni.com/index.php?services_ans Has anyone been to or heard of this neurologist in Macon Georgia? Going to possibly call them Monday morning to get more information

I am new here and just saw this post about Dr. Meador in Atlanta at Emory and was wondering if anyone has been to see him here in Atlanta? Thanks! liz