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July 11, 2012 at 2:42 pm in reply to: Hypothermia? Bloodwork. Doctor cooperation. Diagnostic Proof. Foolproof diagnostics? #2574MeghaParticipant
Hi Megha,
Thanks for mentioning. I’ve actually noticed that it’s not necessarily quite as benign as I’ve always been led to believe. Believe me, my temperature is among the least of my worries but I do wonder if it has any meaning.
Another weird thing, I’ve noticed people mentioning smelling random things. I’ve had that oddity too. Keep smelling cigarette smoke every now and again. I kept feeling confused about it because it was 100% impossible that there had actually been any cigarette smoke nor could there have been any source of this when this happened. Yeah, I can understand ‘blowing off’ getting a whiff while outside in a residential neighborhood. Maybe the wind could catch it and blow it around – no telling. I was smelling it when it was impossible, like in my home where nobody (smoker included) had been there. I don’t smoke. Impossible. Today I smelled popcorn and it confused the heck out of me. I should probably try to find that post and add my info. It was on here somewhere.
How’s your blood pressure? Do you ever have the feeling that there is no blood in your freezing cold legs and feet when you sit? Can’t help but ask since I haven’t been able to warm my legs from the knee down for the past few days (heater won’t work, heating pad won’t work). I wonder if frozen extremities have much to do with LBT or LBP? I mean it’s so bad. Anyway…. a day in the life….
I’m not having problems with the freezing legs and arms currently, but I do still often have freezing hands and feet. And at times the only way I can get warm is to stand in a very hot shower or soak in a very hot tub. That hasn’t happened to me recently, though.
July 2, 2012 at 9:55 pm in reply to: Hypothermia? Bloodwork. Doctor cooperation. Diagnostic Proof. Foolproof diagnostics? #2519MeghaParticipantHi there. I’m sorry I don’t really have any answers for you on how to find the right doctors. But, on the temperature issue I can tell you that me, my mother and my daughter all have the same issue. Ours sometimes drops to 96.8 or so. All doctors have always said that it’s normal and not to worry about it. However, I’ve seen many other people in these forums mention the same thing. I’m wondering how common it is among the EDS / Dysautonomia community and what, exactly, the connection is.
MeghaParticipantHi Dr. Diana, I’ll be emailing you about this too. I think I might qualify. I was diagnosed with dysautonomia but was never told the exact form of it so I’ll be checking with my doc about that. You can’t get rid of me now. ๐
Megha
Most of us with hyperadrenergic POTS KNOW we are hyperadrenergic! Our norepi levels go through the roof after standing for 10 minutes. But it is not essential that you know what type you are. I just want the very SICK ones to be tested. ๐ Assuming the first 10 show what I think they’ll show, then we’ll get to expand the study. Cool? ๐ Diana
Turns out I do have POTS. I guess that’s why I can’t last 5 minutes on the treadmill when they do the stress test. Lol.
Let me know if I can participate in the study. I’m ready and willing. ๐
MeghaParticipantHi Dr. Diana, I’ll be emailing you about this too. I think I might qualify. I was diagnosed with dysautonomia but was never told the exact form of it so I’ll be checking with my doc about that. You can’t get rid of me now. ๐
Megha
Most of us with hyperadrenergic POTS KNOW we are hyperadrenergic! Our norepi levels go through the roof after standing for 10 minutes. But it is not essential that you know what type you are. I just want the very SICK ones to be tested. ๐ Assuming the first 10 show what I think they’ll show, then we’ll get to expand the study. Cool? ๐ Diana
I think my mom would be a great fit for this one but she’s been on topomax for headaches. Would it work if she went off it for the trial?
MeghaParticipantHi Dr. Diana, I’ll be emailing you about this too. I think I might qualify. I was diagnosed with dysautonomia but was never told the exact form of it so I’ll be checking with my doc about that. You can’t get rid of me now. ๐
Megha
MeghaParticipantThanks for all the replies. I gave her Motrin and massaged her legs with a lavender arnica massage oil then put warm rags on them. It took quite a while but she finally stopped writhing and fell asleep. Fortunately it didn’t happen last night. I stocked up on arnica cream and a natural antihistamine as well as an apple cider vinegar based tonic that’s supposed to cure leg cramps. Has anyone tried that?
MeghaParticipantI also have no curve in my cervical spine and have been managing a couple of bulged discs with chiropractic for about 8 years now. I was fortunate to find a chiro who doesn’t do the neck twisting kind of adjustments but uses an activator to just put pressure on the bones to nudge them back into place and keep movement in the neck. I see her at least once or twice a month and she is absolutely the reason that I’m still able to work. Well, her and the dietary changes I made (vegan for 6 years now.) She’s basically my primary doctor. I think the methods of adjustment and having someone who is tuned in to you and focused on healing are the important things to look for in a chiro. I would never let anyone adjust me by twisting my neck again. I guess it’s like everything else for us, what works for one may not work for another. But it’s great that we can share information and give each other hope. Best of luck in finding some methods to work with to bring you some relief. I hope you find it soon.
MeghaParticipantMy daughter had her dental checkup last week and we got some interesting info. One incisor is definitely a peg tooth, the other “might” come in as closer to normal size, it still has some growing to do. She’s also completely missing the tooth next to it. Definite crowding issues and we were referred to an orthodontist for braces. I have mixed feelings about her getting braces so young (she’s 10) but it looks like it’s going to be necessary. Also interestingly, I asked my geneticist if peg teeth are a symptom of EDS and she said no. I know I’ve seen it listed as a symptom in other places so I was a bit surprised that she refuted it. Anybody else have this kind of experience?
MeghaParticipantI went to a dermatologist today for a skin check and to see what can be done about my keloid scars from gallbladder surgery a year ago. I asked her about the cherry moles, she said they’re normal and she can zap them off if I want, but insurance doesn’t pay for that. She didn’t even have a comment about the small pinprick dots. She injected the keloids with steroids and lasered them. (I hope they smooth out.) I guess I’m just stuck with polka-dotted skin. LOL Interesting, the local anesthetic they gave me didn’t work. I felt the laser, so they gave me more anesthetic but it still didn’t work. She did immediately say a mole on my left calf had to come off because that’s the most common place for women to get melanoma. I had no idea. I’ve had the mole for as long as I can remember though so I’m expecting the biopsy to be normal. The anesthetic worked great for that one. Weird.
MeghaParticipantMy daughter has 2 teeth like this. I kept waiting for them to finish coming in. I didn’t know this was part of EDS until I saw your post. She has a dentist appointment next week.
MeghaParticipantI also have longitudinal ridges on my fingernails and have lost the moons on my ring and pinky fingers. My big tonails have horizontal ridges. I’m also seeing some white spots on my nails recently, but I think that’s a sign of zinc deficiency, right?
MeghaParticipantI also have ever multiplying spider veins on my face (and nope I am not a drinker ; )) and legs,
sometimes small blood vessels in my fingers and toes do, I think, just burst- without any reason (no knocks or whatever)- it feels like someone suddenly stabs a needle in my finger/toe and wildly wriggles/stabs it around and then I’m left with a deep and “bloddy under the skin’ bruise that takes ages to go away
( and of course I frequently ‘normally'(meaning without the ‘needle stabbing’ feeling, actually dont feel it at all, bruise ‘without any reason’), my veins are v visible (though I think that’s in part due to my v thin skin)-xxg
Wow bearcat, you’re the first person I’ve come across who also has the strange small blood vessel ruptures in the fingers. I went to my family doc with it and he was stumped, but didn’t seem to think too much of it. I wondered if it was connected to the EDS. My diagnosis is classical with possible vascular, but my insurance wouldn’t pay for the genetic testing so the jury’s still out on that one. I’m sorry you have that crazy symptom, but glad to see that it’s not just me.
All the best to you.
MeghaParticipantThanks for the feedback. I’m noticing the small red flecks on my daughter now, too. I’ll just keep trying to find an answer and will post here if I learn anything else.
Thanks again.
MeghaParticipant
It’s interesting to see this post. My 10yo daughter has always had pretty bad reactions to mosquito bites, not as bad as your daughters. But in India, (where we visit every couple of years to see family) she has terrible reactions. The bite grow almost to golf ball size and gets fevers. I didn’t know about my EDS, or hers, until a couple of years ago so I never put the two things together. Also, she is having either sinus infections or bouts of diarrhea every week or two since September and occasionally has bouts of vomiting for no reason. I never put all of these things together until recently, wondering if it’s all due to the EDS or just something that’s weakened her immune system. I see I have a lot of research to do. -
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