NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR › Reply To: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR
My Rheumatologist refused to give me Diamox because he said it’s a blood vessel thing which is a heart thing and I would have to get POTS confirmed first.
The Internist told me the halter monitor results came back normal. I said, “Are you kidding me? What is their definition of ‘normal’?
Any thoughts? Any ideas on how to get POTS testing? Oh, and my heart ultra sound came back ‘normal’. Three valves have insignificant stenosis and regurgitation. Well, what is their definition of ‘insignificant’?
You bring up some great points, MJ. First, an eye doctor “in the know” is more likely to understand why we need Diamox than a rheumatologist. I’m wrapping up the in-house treatment trial now, and when I can get this published with explanations, you shouldn’t have this much trouble getting Diamox any more! As far as what doctors consider “normal” is based on what they consider “abnormal”. If our funky heart changes are not in their criteria for abnormal, then we’re “normal”. Ditto with things like sleep studies. Dr. McDonnell described a teen with over 200 wake-ups and sky-rocketing tachycardia during the night. Those were not part of the criteria for abnormal, so it was deemed “normal” when it clearly was not. Sometimes I feel that common sense has just gotten thrown out the window, sometimes! We all share in your frustration. I guess you know that it is important to save the RAW data. Even if it makes no sense to you, it may to others down the road. Hang in, OK?