laila Posted March 14, 2006 Report Share Posted March 14, 2006 Ok this is really happy news for me. I have had CFS and Fibromalgia and Anxiety problems for 10 years and have alway felt like something else was not quite right. Especially in the morning I feel so weak and shaky and sick if I have to get up early. Anyways I have had a lot of tests done, been to 2 cardiologists, 3 neurologists, actually found out about pots from this website which I stumbled across somehow. And had to push different primary care docs that kept leaving our HMO for more tests, finally got one to send me to a neuro then another doc said oh you can have that done right in Annapolis instead of up near Baltimore. So after going to the cardio for 2nd time and having an echo, event moniter and ekg she said sinci I don't faint I didn't need one (sorry, I'm talking about a Tilt Table test) I was so discouraged I just gave up on it all. Well then last year my husband lost his job and luckily found a job with insurance, I couldve stayed with the group HMO I was with but decided to try a doctor who ran his own practice for some continuity in care. I went in with all my bloodwork and notes, specialists seen, etc......His first response was "Oh wow we have to stop running to all these specialists!" I was in shock. I mentioned that one doctor had wanted to do a tilt table and he sort of says well that wouldn't really matter much anyway....well I was once again disgusted and felt rushed right out because I think lunch break was starting for them. He didn't even make one helpful suggestion about possible theatments. I finally decided to look for a female doctor to change to because last week I started waking up with hot flashes and palpitations. So I hunched over the manual and called the nearest ones....either huge groups or busy signals....so I went over to the next county and found a group with three doctors, one a woman, and hesitantaly asked the receptionist if she was nice. They said Oh yes she is a good caring doctor. Well the day of my appointment was horrible. I had to take my daughter to school late then was watching my 2 year old granddaughter and had to go to the bank, then pick up daughter from school and then take her to work then drop off Cadence, and then make it to doc. Just doing one of those things on a bad day would do me in. I had to take 3 xanax usually i take 4 a day 2 being at night. Just to get there. Well funny thing she walked in and the nurse had forgotten to do my blood pressure, which she tried to take and went whoa, your pressure is all over the place.....got a top reading of 150 and low bottom reading.....anyway Im rambling...she actually spent time with me.....she said you are a mess and we will try to figure this out. Just by looking at me! And I bought in some info I had found on the internet about Chronic Fatigue treatments to look over with her, she said that is a good idea! Well we never made it to that point, because I was there too long, she does want me to come back to work on that later.I did end up having a fever so maybe thats why I felt so horrible that day. I think I had a sinus infection coming on. Well she said I need a tilt table, gave me antibiotics, wants a 24 hour blood pressure moniter done, which I can't find any one who can do that with our insurance yet. There was a cardio doc in building and had an appointment within a week with him. I was much more calm with him, and he also recommended tt test, already scheduled for next Monday! I cannot believe this. I handed him the POTs syndome symptom list and he knows of Dr. Grubb and Dr. Bell. I feel like God finally heard my prayers. Even if they find nothing, at least I will know, and they said they like to take time with their patients. I left in tears of joy. Sorry this is so long, but if anyone lives near the Maryland area this is the best I've seen in 20 years. The Primary care doc actually commented that the cardio I had seen in the past was one of the best in the state....yet she failed to see throught the lines.......if anyone else needs help i would be glad to refer these wonderful people. Don't give up hope, there are doctors who care! Quote Link to comment Share on other sites More sharing options...
Sunfish Posted March 14, 2006 Report Share Posted March 14, 2006 many congrats on finding docs who seem willing & able to really work with you. so many of us know first hand that this is not an easy task. hope things only get better from here.... melissa Quote Link to comment Share on other sites More sharing options...
halmad85 Posted March 14, 2006 Report Share Posted March 14, 2006 That is wonderful news. I'm so glad that you don't have to stress anymore about finding someone who takes you seriously ans cares. So good to hear. Quote Link to comment Share on other sites More sharing options...
laila Posted March 18, 2006 Author Report Share Posted March 18, 2006 Thank you for undstanding! I will update on test results. Quote Link to comment Share on other sites More sharing options...
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