Agreeky Posted June 24, 2013 Report Share Posted June 24, 2013 I have some symptoms that do not seem related. Throwing them out there. - My legs jerks sometimes.- Face tingles- Hand/Feet go numb easily- Raw patch that comes and goes on my tongue?- Body Swaying/Feel off balance (new symptom)- Feeling like ground shakes beneath you- A weird sizzling sound at the back of my neck... Gets worse when I am hungry ( weird I know) - Lumps all along the base of my rib cage like round balls - If I scrunch my face it like starts to tremble- High Iron Ferratin levels Yes I have been too many neurologist and other doctors. Not much found by neuro other than hyperflexia and positive hoffman sign. He said normal people can this too (previous neuro) If anybody has experience any of these feel free to share thanks! Quote Link to comment Share on other sites More sharing options...
angelloz Posted June 24, 2013 Report Share Posted June 24, 2013 I have had the feeling of the ground swaying beneath me..like I'm on a boat. I go through periods of having my left palm go numb, alson soles of feet and certain toes.Often tender patches at various spots in my mouth. Sometimes I feel off balance. You are not alone. Quote Link to comment Share on other sites More sharing options...
corina Posted June 24, 2013 Report Share Posted June 24, 2013 I have a lot of them too, think I got kind of used to them! Quote Link to comment Share on other sites More sharing options...
Agreeky Posted June 24, 2013 Author Report Share Posted June 24, 2013 Thanks guys! Quote Link to comment Share on other sites More sharing options...
jknh9 Posted June 25, 2013 Report Share Posted June 25, 2013 I get the leg jerking sometimes, the hands and feet (and limbs) going numb often, especially at night, and the sensation like the ground moves. Like the whole room shifts suddenly or something. Quote Link to comment Share on other sites More sharing options...
Foggy01 Posted June 25, 2013 Report Share Posted June 25, 2013 Yeah I get a lot of these. Quote Link to comment Share on other sites More sharing options...
TCP Posted June 25, 2013 Report Share Posted June 25, 2013 Yes lots of weird sensations and more. The leg-kicking and jerking is weird. Some I find creepy like the feeling of cold water trickling down my back; the tight corset feeling around my middle when I need the loo and when I'm in bed and my nervous system is buzzing it sometimes feel like someone has just sat down on the bed next to me. Quote Link to comment Share on other sites More sharing options...
Agreeky Posted June 25, 2013 Author Report Share Posted June 25, 2013 Yes my leg jerking was bad yesterday. I read it can be related to low iron. But my iron is far from low so not sure. TCP I have had something similar to the cold water feeling. I also always think a spider or bug is crawling on me and start wacking my skin lol. Quote Link to comment Share on other sites More sharing options...
The Last Centurion Posted June 28, 2013 Report Share Posted June 28, 2013 I sway whenever I stand still, which makes going to the bathroom interesting. You ladies may not know this, but when standing at a urinal, it's generally frowned upon to lean on a stranger... Quote Link to comment Share on other sites More sharing options...
Agreeky Posted June 28, 2013 Author Report Share Posted June 28, 2013 Lol I can imagine! I wonder why we get this swaying?? Quote Link to comment Share on other sites More sharing options...
Kat Posted June 29, 2013 Report Share Posted June 29, 2013 I also have the swaying. Would love to know the cause. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted June 30, 2013 Report Share Posted June 30, 2013 I know that when i'm relaxing in bed, sometimes my arm just flails up into the air like it was zapped with electricity. Also have raw patches on tongue, was told some random stuff like oral allergy syndrome. If i stick my bottom lip out, it tends to tremble lol. Also, I feel myself swaying quite a bit Quote Link to comment Share on other sites More sharing options...
davecom Posted July 1, 2013 Report Share Posted July 1, 2013 I have lumps in my rib cage too. I have wondered about sarcoidosis as a possible cause of this and a lot of my other stuff, and maybe even an underlying condition causing POTS. Pure speculation though. Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 1, 2013 Report Share Posted July 1, 2013 I have some symptoms that do not seem related. Throwing them out there.- My legs jerks sometimes.- Face tingles- Hand/Feet go numb easily- Raw patch that comes and goes on my tongue?- Body Swaying/Feel off balance (new symptom)- Feeling like ground shakes beneath you- A weird sizzling sound at the back of my neck... Gets worse when I am hungry ( weird I know)- Lumps all along the base of my rib cage like round balls- If I scrunch my face it like starts to tremble- High Iron Ferratin levelsYes I have been too many neurologist and other doctors. Not much found by neuro other than hyperflexia and positive hoffman sign. He said normal people can this too (previous neuro) If anybody has experience any of these feel free to share thanks!Hi Ageeky,Jerky legs, yep. -- comes and goes. Sometimes associated with a medication I might be trying. Sometimes not.Tingling face, Yep -- mostly associated with migraine but not alwaysHand feet go numb easily. -- yep, my feet do go numb very easily -- that's a common problem for me. Not so much my hands -- it happens but not as often as my feet. I can go months without feeling numb hands. I do however get a couple of numb fingers sometimes which are associated with migraine.No raw patch on tongueswaying -- feels like I'm on a boatGround shaking beneath me -- no, but I have had the sensation that the ground beneath is falling away (have had that since I was 16 and am now in my 50s) Glad you mentioned it because I realized I haven't felt that symptom in quite some time. When I feel the ground falling away my body jerks in response like I'm trying to hold onto something. It only lasts a split second but is very disconcerting. Glad I haven't had it in a whileNo weird sizzling soundNo lumps at bottom of my rib cageI wouldn't scrunch my face as it could trigger a migraine, maybe.Low normal iron levels last time I was tested. But have confirmed my iron levels can change from one blood test to another and they were only a month apart. No one had an answer for me.I've got my own weird symptom I'm going to start a topic on and see if anyone gets it. Sometimes I can hear a cracking sound in my head, mostly my face. It's as if my brain has gotten too big for my skull. It's associated with migraine most of the time, but not always. Although the times it's not associated with migraine I could be having a 'silent' migraine.blue Quote Link to comment Share on other sites More sharing options...
Agreeky Posted July 1, 2013 Author Report Share Posted July 1, 2013 Davecom that is a good theory about the lumps. I have often mentioned them to doctors and have been ignored. Also get tiny tiny little round bumps near my armpits. Blue I have never had that cracking sound. I do get told I have silent migraine though. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted July 2, 2013 Report Share Posted July 2, 2013 I have recently begun experiencing migraines too, Agreeky. I never had them in my life, although my mom has them. Then lately, I started noticing vision problems, strange light issues/ wavy stuff in peripheral vision. Not long after that I had a headache. It wasn't super bad, but it wasn't nice.I'm assuming this is a Pots issue because it didn't start until all of this started happening to me.My mom actually experiences some sound issues with hers. Sometimes she says she has almost electrical charges or something on the top of her head she can hear. It's weird lol I know but that's what she says :/ Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 3, 2013 Report Share Posted July 3, 2013 Your mums not weird Ashley I can get the electrical buzzes too. And although my migraine changes form over time -- I long for the days when a migraine was 'classical' started with zig zag lights pattern that moved across my vision for about 20 minutes, then no pain at all for about 20 minutes, then 3 hours of violent migraine with vomiting then blissful peace I no longer get that type. Mine have gone on so long and have morphed and can last 3 days (they used to last 5 days but medication has helped somewhat). Some years ago, I went through a stage when in the throes of a very severe migraine I could 'hear' a high pitched ringing tone. Actually, I could 'feel it.' I remember going to the migraine clinic at the time and mentioned this to the panel of three specialists. Two pain specialists, one a psychiatrist. I thought that they were going to think I was nuts when I said I could 'feel' that sound. They said, no, that this happens to some people. Our senses and things all get muddled up. blue Quote Link to comment Share on other sites More sharing options...
Agreeky Posted July 3, 2013 Author Report Share Posted July 3, 2013 Migraines can cause some crazy symptoms. Do not know if mine are pots are not because they run in my family. One neuro tried to blame all my symptoms on migraines including stomach issues. Do not really buy that though. Quote Link to comment Share on other sites More sharing options...
The Last Centurion Posted July 9, 2013 Report Share Posted July 9, 2013 Does anyone's voice change in heat? If I'm in extreme heat for too long, my voice goes a little Will Arnett-y for a few minutes. Then it goes to a current version of Clint Eastwood, which would be cool except the heat causes me to forget words, get lost in sentences and stutter. At that point, I am also unable to raise my voice. Does anyone have issues waking up? If I sleep 2 hours, I feel rested, but the chest pains are worse. There is no alarm on earth that can wake me up if I sleep more than 2. I have to be shaken and yelled at for 10-15 min. I feel like death if I get more than 4 hours. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 9, 2013 Report Share Posted July 9, 2013 My hands and feet have not gone numb for a long time, but when my symptoms were more severe I remember that happening. I do get tingling in my fingers and toes sometimes. I experience involuntary muscle movement in my legs from time to time. I tend to have low iron so perhaps that plays a role. I do also get the feeling of swaying or the ground moving. My balance is not good. I try to manage this with yoga. I think yoga can help improve balance/body awareness. Quote Link to comment Share on other sites More sharing options...
Agreeky Posted July 13, 2013 Author Report Share Posted July 13, 2013 MomtoGiuliana I was doing yoga and it seemed to help. But I have bad knees and it started to hurt them : ( i heard low Iron can cause muscle jerks. Im a weird one though where my iron is normal except my ferritin which is the iron in your body and mines very high for a female. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 14, 2013 Report Share Posted July 14, 2013 I DO get the soda pop sound at the back of my neck all the time! Quote Link to comment Share on other sites More sharing options...
Freaked Posted July 14, 2013 Report Share Posted July 14, 2013 I have everything except the sizzling, lumps and high iron. The high iron levels are interesting though, and would fit nicely with a blood volume theory I've been thinking of. Have you had your blood volume tested? Quote Link to comment Share on other sites More sharing options...
Agreeky Posted July 17, 2013 Author Report Share Posted July 17, 2013 Hanice it is weird isnt it! Mine gets worse when I am hungry? Freaked never had it tested. How do you test that? Quote Link to comment Share on other sites More sharing options...
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