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South Florida—EDS / POTS / mast cell / Chiari (one suggestion included) 
Posted: 13 January 2015 05:59 PM   [ Ignore ]  
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After a 9 year search and a “dx” of fibromyalgia I’ve only ever viewed as a place holder, an angel of an acquaintance told me about EDS. I was skeptical since I’ve never had a dislocation. As I dug into info online, I came to the conclusion that at least 5 family members have been suffering unknowingly, some of us for decades. 4 of us have had “nursemaids” elbows or slipped knees (releases like nursemaids elbow when bent), hips that slip/grind, excruciating tailbone pain, or surgery for loose shoulder.

I believe we all suffer from POTS as well, possibly hyperadrenergic. Even my 7 year old has vision black out’s upon standing.

My 13 yo son has had unexplained and undiagnosed hives since he was 6, (the “skin writing” kind) which must have something to do with mast cells, though I don’t understand much about it.

My mom and I may also have Chiari Malformation, or at least the symptoms. I get the base of the skull headaches with that sickening feeling, and my mom was recently hospitalized with horrendous “migraines” out of the blue. Of course, no answers, only meds. Due to that and a limp from her hip pain (her ortho says she’s a-ok), she had to retire at age 53 from a job she loved.

We’re in WPB and the acquaintance was dxd by her physical therapist, Dr Wexler, Palm Beach Orthopedics, but she does NOT have POTS, so I’m not sure if he’s the best for us. At least he’s a start!

TIA for any suggestions!

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Posted: 14 January 2015 02:09 PM   [ Ignore ]   [ # 1 ]  
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Hi libertymama, Boy, do you sound like my family! wink The only fear of seeing specialists in EDS without having the POTS properly treated can be the misdiagnosis of many of our presentations. You may have read about our family’s experience… We were told we needed neck fusions, Chiari surgery, they were considering tethered cord surgery. Instead, medical treatment reversed these presentations immediately. One reason I wrote the book was to alert others that this misconception has been missed for years - these symptoms were getting lost in the mix of our ANY other symptoms. We are so glad that we did not undergo these surgeries, as our kids are now thriving. For some, surgery may be inevitable, but for many of us, it is not needed. AWESOME. Fingers crossed for you and your kids! wink

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 14 January 2015 08:07 PM   [ Ignore ]   [ # 2 ]  
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That sickening feeling, the nausea, is usually caused (or worsened) by having the head in flexion, so I’d avoid this position wherever possible.

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Posted: 19 March 2015 03:30 PM   [ Ignore ]   [ # 3 ]  
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Thanks for the replies! I have an update and some more questions now.

I decided to start with seeking a POTS diagnosis rather than EDS first. Seemed logical since there are easily measurable factors. I’ve already forgotten how, but I made the decision to start with a cardiologist. I went to the West Palm Beach, FL office of the Cleveland Clinic and saw Dr. Darryl Miller for an evaluation.

An EKG was performed before the Dr came in which was “abnormal” due only to my fast pulse of 116 while seated but reclined (I’m usually 60-75 lying flat). The slightest stress, good or bad, makes me feel really weak and faint, hands cold and tingly. I just want to lie down and close my eyes. Visiting the Dr is pretty high on the list of things that make me feel more stressed than I should.

BP while seated was 142/80. It’s regularly even higher while standing. Completely normal lying down.

So, the Dr came in and was very professional. He did not condescend or demean in the least. I gave him the following list of my “major” symptoms:

HR 55-75 lying down
HR 120 usually upon standing
HR 140+ cleaning room (bending over) or carrying groceries
HR 150-175 walking up a flight of stairs or coaching gymnastics (moving around quickly, light lifting)

Fatigue (10-12 hrs still feel exhausted)
Weakness
Cognitive Impairment (blanking out on my address, leaving a store because I can’t think clearly enough to recall why I’m there)
Temperature Regulation (always freezing indoors)
Nausea(daily) / Vomiting
Easily Overstimulated
Noise / Light Sensitivity
Tingling Hands / Feet
Overactive Startle Response
Tachycardia / Palpitations
Akathisia (“restless body syndrome”)
2 Possible Mini Strokes (saying words didn’t mean, hand completely numb)

He stated that these symptoms are *NOT* “POTS”, however he referred me to their Weston, FL Cleveland Clinic office for a consult with a Neurologist specializing in autonomic dysfunction. Huh?

I was confused by his attempt to explain that relation/difference between dysautonomia and POTS, but I count myself lucky and I didn’t hit a brick wall, and didn’t leave it tears. Hooray!! smile

{{{QUESTIONS}}}

1. What do you all make of this visit?
2. Should I meet with the neurologist?
3. Should I go through with the tests (below) he scheduled for me?

ECHO (heart ultrasound)
Complete Blood Count (rule out anemia)
Complete Metabolic Panel
TSH w/ Reflex T-4 Free (thyroid)


Thank you for any input!!
Erin

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