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Good News! Good News! You won't believe the


LindaJoy
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Hi, everyone. I just had to share my good news. Today, I saw a new family doctor who was recommended to me by my heart doctor, since my current family doctor doesn't know anything about POTS and has continually told me that all of my problems are simply from anxiety. Anyway, with trepidation, I saw this new doctor, and guess what? She interned under Dr. Grubb!!!!!! She knows all about POTS, sat in on TTTs, visited many, many POTS patients while making rounds with Dr. Grubb. I was so excited to hear this, I about fell on the floor!!! I feel so blessed! She spent over an hour with me and my husband, answering sooo many of my questions, like about my asthma--my peak flows have gotten better since I quit taking my Azmacort, so I wondered if it was asthma or POTS. She said, if my breathing is better, it's best to look at my numbers and go by them instead of an older diagnosis, so I don't have to go back on any asthma meds. Then, I asked about my Zoloft, because it actually gives me anxiety (was given to me years ago by my gp who said I have simple anxiety with no physical condition). My new doctor said, once my POTS spell tones down a bit, she'd like to ween my down on my Zoloft. She also wants the Cleveland Clinic doctors to send her all of my records and for me to tell them about her so that they will keep her in the loop. Wow! I feel like, any minute, someone is going to come along and wake me up! I'm sorry to go on and on. I just feel sooooo relieved and excited to finally have a local doctor believe in what I have and know how to help. What a great doctor's visit, which is a rarity with this condition!!

Oh, too, wanted to let you all know that I'm scheduled for more tests the 18th and 19th, at Cleveland. They're going to check my circulation and blood volume, then do autonomic testing. I'm a little nervous, but the tests can't be any worse than most I've already had....can they?

Hope this finds all of you doing well.

LindaJOy

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Hi Linda

Wow. I am very happy for you - you have found a gem. I notice that you go the Cleveland Clinic. Do you live in Ohio? I am looking for a new PCP for my 17 year old daughter who has POTS. Our old pediatirician left the practice and while she misdiagnosed Rachel for a long time - she at least apologized once things were figured out. Her repalcement is a nightmare. I live in NE Ohio.

Louise

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Linda,

So happy you found a knowledgable physician. My internist is a God send. It helps so much to have someone who takes us seriously. Don't worry about the testing, it's usually not as bad as we anticipate. Plus the technicians are right on top of things, it's what they do all day. Try not to even think of the tests til you get there. The upside is you will get some answers which makes any test worth it.

Dawn ;)

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LindaJoy,

You can't ask for anyone better than someone trained by Dr. Grubb from what I hear -- well, except maybe Dr. Grubb himself. You are very lucky and sound like you are in good hands.

So did she say whether the breathing difficulties are asthma or POTS? Like I told you in a recent post, I didn't have asthma pre-POTS, but my PFT is abnormal now ... so because no one knows what else it could be, they're calling it asthma. But it's constant shortness of breath. Did she say anything about having chronic shortness of breath with POTS?

Amy

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Thank you all, so much, for your shared enthusiasm. Loise, I live 30 minutes north of Lima, in Northwest Ohio. Are you familiar with that area? Let me know if I can be of any help to you and your daughter. Have you been to the Cleveland Clinic. How far from there are you?

Amy, my new gp thinks my breathing difficulty at times may be more POTS than asthma, since my peak flow numbers actually shot up after stopping my cortico-steroid and since I don't have wheezing. Now, I do have tons of allergies that cause me stuffy, runny nose, sneezing, coughing at times, itchy eyes, etc., but I take Benadryl for them and do fine. I really don't know how to determine if its asthma or POTS. My gp didn't say anything more about it other than to stay off the meds since I breathe better without them. I did notice, too, that this "return" of asthma came at the same time, years ago, when I was going through a very bad POTS spell. I hope you get some answers soon!

Dawn, thank you for your comforting words about my approaching tests. After my blood pressure dropped to 26 / 14 during my TTT, I"m really apprehensive about more tests. But, I will do like you said and not think about them until the time comes. That will just cause me tons of stress, I know. Thanks, again.

Hope this finds all of you doing well.

Linda

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Hi Linda;

I am so glad for you. I am not familiar with Dr. Grubbs. I have only heard about him here. It is wonderful that you found a competant doctor that had the experience of interning under him. I have heard that the Cleveland Clinic is a great place and has top notch doctors.

I was first diagnosed with asthma 12 years ago. Sometimes I think that is where it all started. The bad part about it now is with asthma I can't take certain medications that would help me with POTS.

I live outside of Toledo. I have found that there are doctors around here that do know about dysautonomia but don't know what to do about it. My cardiologist, from St. Vincent's Hospital in Toledo diagnosed my POTS and seems to be very knowledgable about it. I think you just have to look until you find a good one. You are so lucky and I am so happy for you!! Congratulations on finding your "needle in the hay stack"!!!

This great news alone must have taken alot of stress off your shoulders. Take care!!!

KathyP B)

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