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mollydoll

Numbness

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I have POTS. I woke up today and my whole body was numb. If i lifted my arm it would feel even more pins and needles like blood could go up even more so. My pulse felt so so weak and so did I and i feel like my heart felt weak but I don't know if I can perceive that or if that's where my anxiety kicks in. My doctor's really want me to stop going to the ER. I called the paramedics and they said it looked normal so I didn't go with them and just left a message for my doctor. Has anyone else experienced numbness? I'm so concerned and confused. I have had all normal heart work ups. My stress test is a year old but my recent echo and bloodwork and ekg are all normal. Can POTS make u numb or make ur circulation bad? Don't want i die and also want to function without catastrophizing.

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Are you just diagnosed with POTS or do you have other diagnosis? The reason I ask is that I have numbness in my arms and hands, also in my ears and lips occasionally.  They eventually found that I have craniocervical instability. The theory is that this contributes to the numbness. This is VERY rare and unrelated, so you probably don't have this.

Do your hands turn purple when they go numb? I have that too and it is Reynaud's Phenomenon. 

My legs go numb when they stay in one position too long or I cross them. I just chalk that up to blood pooling / poor venous return. I never really got an answer on that.

If I get cold I have more trouble with numbness. 

I hope this helps. 

Kim 

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I'll second what KiminOrlando said.  My daughter has cervical instability  and has a lot of numbness.  She also has a lot of other neurological symptoms. Some people have craniocervical and some just cervical (due to her Ehlers Danlos).  Took us forever to get a diagnosis, so she got really bad before anyone knew what was going on.  (Going to have multiple spinal fusions C3-T3) end of the month).  Circulation, too.  Some days she's very pale due to lack of circulation, and some days she has so much circulation that it causes a phenomenon called erythromelalgia.  It's just the opposite of Reynaud's (which she has, too!).  One day when she was very pale and circulation was, let's say, non-existent, she had to have blood drawn.  We actually had to leave and come back another day.  Couldn't find a vein that would give any blood.  That's happened a lot in our journey.  My daughter also had multiple trips to the ER (25, but who's counting).  Her trips were mostly for the muscle spasms that would get carried away and render her in a dystonic posture, unable to move.  Or we went for the unbearable pain that would cause her to black out. (Also blacks out when she moves her head in a certain position.  Crimping off her corotids or also the vertebral arteries.  Depends on which way she moves).  We went so much that they sent us a letter and said they wouldn't see us anymore.  Got a copy of her records and a couple of the main doctors that we say were saying she was 'drug seeking'.  Do you have any other symptoms that you aren't listing because you don't think they are associated?  Just curious. 

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Thanks guys! I have POTS so far. I am waiting to see a neurologist and a new cardiologist wasn't interested in treating autonomic dysfunction. Also, I will be see and endocrinologist. My hands don't turn purple but my left hand is cold as ice. Lifting my arms to type on my phone right now is causing numbness so i've turned over. chest and left arm feel weird but cardiologist would say in an exasperated tone "ok but this is anxiety this isn't your heart. so. i'm just nervous my heart will fail before i get to the next cardiologist but i'd rather think is all 100% pots in the meantime so i can sleep at night. mornings are pretty awful this week.

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I have a constant tingling sensation in my hands and feet.  I wouldn't call it numbness, but it is a pins and needles like sensation.  High norepinephrine can cause cold and /or pale skin by its vasoconstrictive effects, especially in the extremities and in the face.

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I had a numbness episode on left side of my body years before any diagnosis,in hospital and all tests were negative-NOC-no "obvious" cause-LOL...Have had cervical disc issues for years now ('84) and so I attribute numbness of hands/arms to that. I also have lower leg numbness, left more so than right and all the docs say "yeah its peripheral neuropathy" but no one concerned as to cause. Again, I am old with lumbar and thoracic spine issues-so may be the cause....So I deal with the numbness-the arms and hands come and go, but the left leg numbness is hard because I can't always feel the floor-I use a cane for balance, in case. Oddly enough a neurological things like numbness is not going to directly affect the heart muscle from my understanding of things and from what my docs have said. I too have had several heart function tests-all normal...its confusing how our body reacts some time

Debbie

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