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Waiting For Diagnosis


jbenz1772
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Hi all! Going to try to keep this short. Last March started with left chest pain that wrapped around and under my shoulder blade Hand and foot numbness and migraine aura. after about 3 weeks subsided but having frequent muscle twitching especially thigh, upper arm and eye. And shortness of breath when walking to parked car or up the stairs. Then in August chest pain started Numbness and tingling, brain fog, migraine aura, mixing of words, buzzing of foot and progressed to feeling of icy hot put on patches of my body. Want to sit once I get to top of stairs. (side note: for 6 yrs have had near fainting episodes while cheering for my sons football games, at one point almost called 911) My primary sent me to the ER and Dr. there mentioned MS, then went to first neurologist who after negative MRI's put me on Cymbalta for the neuropathies and said he didn't have a diagnosis nor were there any other tests to be done. Then in early Dec my daughter was competing state gymnastics, of course I was cheering and had near fainting. The next day was cleaning(makes me feel really bad), putting up Christmas decor and cooking when I passed out in Kitchen. Time to see new neurologist. LOVE HER: She right away told me a few different possibilities and set up testing that day and another round of tests:

Holter monitor: 11hrs 46 min of tachycardia in 48hrs, incl at 3am when got up to go to the bathroom

Tilt table: went from 61bpm laying to over 100bpm upon tilt as well as chest pain, dizziness and flushing (tech could tell it was coming before I felt it)

Quant sweat: right arm didn't sweat at all

Thermoregulatory Sweat: No sweating at 10min, or 20 min, reached 38 celcius in 30 min and only small sweat on wrists

Had the tilt table and sweat tests on Tuesday and increase in numbness and tingling in right foot, leg and hand since.

My days go up and down can have several okay days in a row, but still feel like crap after climbing stairs and bending/stooping. Taking the Christmas tree down almost took me down.

Just wondering if any of this sounds familiar to you and looking for support and ideas.

Thanks,

Jennifer

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Hey there,

I'm a newbie and your situation sounds pretty close to mine. I have had lots of near fainting episodes for years until about 8 weeks ago I had the worst one of my life along with slurred speech, involuntary muscle movements, tachycardia, flushing, etc. I get the muscle twitching, shaking, jerking, you name it also. You are definitely in the right place. I get lots of encouragement, information, and support on this site. Your situation is all too familiar to most on here so don't feel alone. I have POTS and dysautonomia. Look up those diagnoses and search out the good knowledgeable doctors in your area. Check out the ways to help and the what to avoid section under POTS on the homepage of this site. Lots of good ideas. And do not get yourself hot. Early on, I didn't realize what a difference taking a hot bath or shower made on my heart until my condition worsened. Avoid extreme temperatures and keep track of anything that you may be eating or doing that aggravates your symptoms. Get up slowly. Stay hydrated....drink tons and tons of water. And if don't already, have a blood pressure cuff at your house so you can monitor bp/pulse when you feel symptoms. That's a great help for your doctor to have that info. Hang in there and be encouraged!

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Thank you to everyone for making me feel welcome. I have tried to increase me fluids. It seems like the symptoms have actually started to increase again just since the "hot room" thermoregulatory test. I've had some extra stress and a cold too. But my right arm feels like "restless arm" syndrome. LOL no other way to describe it. And the feeling like I had a two hour workout just taking a shower.(out of breath and need to sit down to recover).

Jen

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