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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Hyper Pots or Tumor or ?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Hyper Pots or Tumor or ? › Reply To: Hyper Pots or Tumor or ?

November 13, 2012 at 11:35 am #3124
Joann
Participant

That is what I am going to start doing. But I am in the process of getting all of my medical records from all the different doctors and hospitals I have seen. AND that is not easy. They do not want to give them to you, I have had offices say they will fax to what doctors I want, or that I have to pay for them, I must come in for them, I don’t need them, etc. So I am slowly getting them and I am creating a binder with everything. I tried calling MAYO, but I have to fax all the records to them before they will talk to me. So, I have to wait. I am thinking of calling Cleveland Clinic, or Dr. G. in Toledo. Both of them aren’t too far away for me. Please let me know how your appointments go.
I just don’t understand why they will not just do all the tests. I mean ok, so they are pretty sure i have hyper pots. So why not check to see what could be causing it, is is a net thing, a mast cell, a volume, etc. I hear their are many reasons and depending on what it it can vary what will work.
The latest doctor told me that as long as my blood work came back without any abnormal levels, she wants me to change the cardura to cholondine. Then the next month she would like me to change beta blockers and then if that helps stabalize it she wants me to start her exercise rountine. I admit I am terrified to change medications, I don’t want to get worse, and when I am just a little late taking one, I feel awful. I know I should look at it as it may make everthing so much better, but that hasn’t really been my experience lately. So, I have to decide when to make this new change, and hope for the best. I will watch the video you suggested also. Thanks and good luck to you too.

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