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Merrill

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Merrill

Just thought I'd chime on the arm symptoms--when my POTS was very bad, I had numbness, odd pains, sharp prickly feelings, and a restless feeling, in my arms, especially at night. I don't anymore. I don't remember having any kind of cramping in my arms--but in my feet and legs frequently (and still at times, now). The cramping does sound like it could be potassium or other deficiency. I'm glad you are getting the MRI to rule out other things.

Regarding the feeling of blood draining--I get that feeling in different parts of my body pretty frequently still--arms, upper body in particular.

Katherine

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Guest tearose

Hmm, cookies make me feel better...a lot of cookies make me feel a lot better, at least while I'm eating them!

You'd better get that cookie sheet down Merrill...unless you have to reach over your head to get it. I don't want to add to your arm and hand numbness. In fact you shouldn't be mixing cookie dough in your condition. Oh what the heck I'll help you bake some. After all to satisfy everyone we're gonna have to make some original, some sugar-free, some gluten free, some chocolate free, some organic and some low glycemic!

You might want to convince us all to eat celery instead!

I hope you get some valuable information from the MRI, it is probably C5 and C6 with a minimal bulge that is effecting your arms and hands.

I'm starting to fade.

good night, hang in there till your MRI, tearose

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Guest tearose

hey smartie pants emily, I was trying to be politically correct. What can you come up with that is neutral for those who eat tofu and those who eat sugar?? You just want my cookie.

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Hi, noodgie ... My appt. w/new internist went OK ... I went to establish myself w/a new doc b/c my former internist just retired at Thanksgiving--just in time for my "autonomic storm" (what a great term for what happened), which left me unsure who to call or what to do. She was nice (my first female doc in a gazillion years) -- and has seen exactly ONE patient w/Pots before. (This other person was hospitalized w/fatigue etc--couldn't get out of bed ... couldn't get diagnosed very quickly or easily either!) She's clearly not going to be my POTS doc (I'm hoping the new electrophysiologist I'm seeing mid-January will be, however); but she'll be my go-to-guy when I get treatable diseases--or need tests or whatever. She was struck by my story of last week... and ordered cervical spine X-rays (which I got this afternoon) and a cervical spine MRI with contrast (which I haven't yet scheduled). So I got what I wanted, I suppose. I also got her to take blood and test for magnesium and electrolytes ... I'll get X-ray and blood results Friday.

I just have to tell y'all how grateful I am for this site and for the materials from NDRF ... I showed off my bracelet with pride and told her about my community that has educated me on this condition (she noted with a bit of irony that doctors in Illinois also have a bracelet relating to malpractice ... I think that's why my other GP retired waaaay early ... fed up with what it's like to practice medicine these days.)

She told me I should consider wearing a medic alert bracelet or at least carrying information in my purse that explained POTS just in case I get hit by a truck on Michigan avenue; people in the ER need to know what this is so they don't mistreat me. (And boy, did I have forum flashbacks when she said that...I know you all have bad ER experiences ... one reason I didn't go there myself last week!)

I'm pooped too--so off to bed w/me.

take care, all.

m

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Happy to hear about your success, Merrill! Hope this doc works out well. Keep us posted on the radiology front!

I have to agree with your idea for medical alert bracelet. My dad had me get a necklace with a medi-alert pendant (two discs that can be slipped apart so you can engrave info on three different sides -- I needed lots of room! :D ). Thankfully, whenever I've been to the ER, I've been reasonably coherent, so I haven't had to trust my care to two polished stainless steel discs! :)

Take care and sweet dreams!

Angela

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