Crohn's Disease Forum » Support Forum » Undiagnosed Club » UNDIAGNOSED?? - be sure to check for dysautonomia/POTS

02-03-2018, 01:14 AM   #1
Join Date: Feb 2018
UNDIAGNOSED?? - be sure to check for dysautonomia/POTS

UNDIAGNOSED??? If you are still undiagnosed and you know something is really wrong, you need to make sure and look into dysautonomia/postural orthostatic tachycardia syndrome (POTS). This basically means that your autonomic nervous system is not functioning properly. Ask your neurologist or cardiologist about a ďtilt table testĒ. The reason why I am saying this is because I spent 4 months trying to figure out what was wrong with me. I saw 10 different doctors who ran a ton of tests and they all said everything was fine. Over those 4 months I experienced a long list of symptoms. These included severe shortness of breath (sometimes triggered by eating, but it wasnít because it blocked my throat or anything), major tremors, major brain fog, declined mental acuity, dizziness, imbalance, diarrhea, constipation, severely clogged ears, insomnia, stiffness in my neck and back. However, POTS symptoms can differ greatly from person to person. Be sure to see a doctor who knows about this because part of the reason why local doctors couldnít figure out what was wrong with me is because they didnít/donít know about dysautonomia/POTS. I had to end up going to the Mayo Clinic in another state to diagnose me. I say this because there will be others. I too was once reading forums such as this one Iím making now, desperately searching for answers.. A lot of people never go back and post what was wrong with them when they figure it out. I made a commitment to myself that I would, so that maybe I could help people who are in my past situation. God bless you all.
02-05-2018, 09:14 PM   #2
Jennifer's Avatar
Join Date: Jan 2010
Location: California

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Thank you for sharing your story jrd030. I'm glad you were able to get a diagnosis. What are you taking/doing to treat it? Have all of your symptoms gone away?
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
09-28-2018, 06:41 PM   #3
Join Date: Jun 2013
Jrd030, My heart goes out to you. I have POTS and crohns. I was diagnosed with crohns in my twenties and POTS at forty. The POTS diagnosis didn't come easily. Hope you start to feel better.

Crohn's Disease Forum » Support Forum » Undiagnosed Club » UNDIAGNOSED?? - be sure to check for dysautonomia/POTS
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