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db2504

Ncs And Pots

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My daughters diagnosis was chgd from pots to ncs today. We r so confused. This was the second cardiologist we saw and the second diagnosis. We don't know who to believe. Has anyone been to NYU to see dr horacio Kauffman. We were told to see him or Dr grubb in Cleveland bc her symptoms are not in line with NCS. Help!!!

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It is possible to have both NCS and POTS. I feel for you because it is so hard when the doctor's can't agree on anything. My dx is POTS officially, but, I have all sorts of weird bp issues too. It seems like every time I see my POTS neuro, my bp is doing something different and inappropriate.

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Yeah it's possible for her to have both. I was diagnosed with both POTS and NCS because during my tilt table test, my hr went from 68 laying and 116 upright. It stayed around 115-120 for 10 min then immediately dropped to the 40's. My BP also went from 100/70 to 84/48 when my hr dropped. The increased rate bought me a POTS diagnosis and the rapid drop of hr and bp means NCS.

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DB, Sorry that you are going through this right now. Which doctor are you closest to? They are both specialists in this area. Dr. grubb is in Columbus. If you are looking for a pediatric Dysautanomia specialist in Cleveland, there is one that I know of, his name is Dr. Moodley.

Sarah

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http://www.dynainc.org/docs/ncs-pots-combined.pdf

It's definitely not uncommon for a patient to have both. The tilt table test was originally developed to diagnose NCS. It's used for POTS now too, but a doctor who is unaware of POTS (and a lot of them haven't even heard the acronym, even cardiologists) might look at the test and only see NCS. Mine diagnosed me with NCS and inappropriate sinus tachycardia, despite it showing very clearly POTS.

NCS and POTS both have very clear diagnostic criteria. POTS - your hr rises 30 beats (40 in children) or more, or above 120, within 10 minutes of standing, with no orthostatic hypotension (large drop in Bp) during that time, but causing symptoms. NCS - steep fall in hr and/or Bp, resulting in loss of consciousness, after at least 3 minutes upright.

People with POTS and NCS generally seem to display POTS symptoms (rise in hr, stable Bp) in the first 10 minutes of the tilt, fainting shortly afterward.

Do you have a copy of her test data? What did her heart rate do over time?

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Hi Libby. Thk u so much for responding. I do have the results of her tilt table test Bp was 111/76 and hr was 80. Upon tilting the table to 80 degrees, her hr increased to around 110 bpm and then abruptly dropped around 40 to 42 bpm. The dr could not get a blood pressure bc she fainted within 1 minute. This leads me to believe she has both but the dr on Thursday said bc he was unable to mimic her high hr upon standing so she does not have pots. Yet, he did not even wait 30 seconds after she was told to stand to check her vitals. Shouldn't he have waited till she was symptomatic to check her hr. Also her bp was 116/80 pulse 84 when laying. 110/70 pulse 84 when sitting ( but again did not wait) then 106/68 pulse 88 when standing with no wait time or any re- check at different intervals. He also was arguing with us that the tilt table test exacerbated her symptoms. She is feeling horrible since the test and is experiencing many more symptoms prior to having the test. Have u ever heard of this?

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Hi Sarah. Thk u for responding. My daughter is 23 so the pediatric dr is out of the question. We have an excellent pediatric doctor in pennsylvania buy he will not see her. I did some research and read reviews about both doctors I mentioned and was not overly pleased with what patients were saying. I don't want to travel thst far and not have a positive experience. I think she needs to have a complete autonomic testing done to get a definite diagnosis but I don't know where to start. We do have an appt with a neurologist on Tuesday who is very good at diagnosing. I hope he can give us some information and help with some of the really debilitating symptoms; especially the brain fog and all day dizziness. She is a teacher and it is getting very hard for her to keep working

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When a poor man's ttt (checking vitals supine or sitting then checking them standing, vitals should be checked after supine or sitting for at least 15 minutes, then after standing at several intervals for the first 10 minutes. For example, my POTS neuro has me sit and we do the talking part of my appt, then 20-30 minutes into talking, he takes my sitting vitals. Then he has me stand (bolt still, no coutermaneuvers) and checks my vitals at 1 minute, 3, 7, and 10 minutes. He also notes during this time any signs and symptoms, for example changes in the coloring in my hands and legs that would indicate blood pooling, tremors in my hands, Palo in my face, sweating, nausea, dizziness, etc..

It did take me several days to recover from both of my ttt and I was presyncopal but didn't pass out.

Hang in there. Sometimes it takes a few tries before finding a doctor that you feel comfortable with and truly wants to help you. Your daughter is lucky to have a supportive parent who is willing to fight for her.

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DB,

Sorry, I assumed pediatrics because of Dr. Kaufmann. Some of the other members in the past have tried getting into him and have had difficulty because he only sees patients under 18. Hopefully when you see the neurologist this week he'll be able to point you ladies in the right direction regarding testing and your questions about her diagnosis. Just for future reference, DINET has a link at the top of their main website, Physician List, where you can locate a specialist closest to you. I hope that helps. Katie is right, your daughter is very lucky to have someone who is willing to support her so much! Best of luck at her appointment!

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Hi Sarah. I didn't realize dr Kaufman was a pediatric specialist. I was referred by tbe last cardiologist we saw. That just goes to show u how much he knows. Thanks again for your insight and compassion. It is greatly appreciated.

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