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You are funny!
Well, I saw my pcp Friday… She was at a loss for the things I asked about, like telling her straight up that I want to pursue an EDS dx. One problem is that there only 2 or 3 geneticists in this area, eastern Washington state. I brought up all the symptoms I have that I think are dysautonomia related. That fell very flat. Oh, but she DID ask if I’ve ever had counseling… (b/c people with a lot of health problems get depressed and counseling can help) Before I left she had the nurse come in and check my bp when lying down, sitting up and standing up. I asked her to check my pulse, as well. She did each at 1 minute intervals. I brought up that my pulse goes up after 5 minutes, but by that time I knew I was done there. The labs she had drawn all came back normal. So, I guess I’m “fine”, too!
I would be interested if you know of any in docs in the northwest. I don’t have a lot of confidence that my insurance would cover a doc in another area, but it’s worth a try. But then I would still need her to refer. =[ Thank you!
I can’t thank you enough for your input, PalominoMorgan! That is exactly what I have needed. And that has been the problem when seeing other docs, like when I saw my new ophthalmologist and neurologist. Without having a confirmed dx, they give you the “look” if you suggest the possibility of something such as EDS. She has mentioned sending me to a rheumatologist. I’m thinking if I can get EDS dx’d, I would be in a better position to suggest a cardiologist for possible dysautonomia.
So, then, one more question, if you don’t mind, what doc would dx EDS, or would it be my pcp? Thank you again so much
I too have cold skin and even if I don’t feel cold, like right now my torso, legs, feet, hands and arms are all cold to touch, (oh and nose). My temp usually runs about 97. But then occasionally the tops of my thighs will get hot for a few minutes for no apparent reason. At my dr. appt. 2 weeks ago my temp was 100. Don’t know what that’s about and she didn’t either.
My bp is labile and I do, at times, have +30 pulse when I go from lying down to standing up, usually after 5 minutes. But not all the time, usually in the morning.
I am at the beginning of trying to figure all of this out, (my only “official” dx is fibromyalgia and depression) but I have never been convinced that that is all that’s going on. It seems like it must, at least, be dysautonomia, too. I would really like to know what kind of dr. would dx it and also EDS. My pcp is thinking along those lines (EDS), especially after I tore the skin under my eye when I wiped water away in the shower, but she thinks that even if we knew for sure, there isn’t any treatment for it anyway. And then add in ccsvi symptoms, the dialogue with her gets more complicated. My insurance requires referrals, which she is pretty willing to do. So I am in need of some direction, if anyone has any input it would be much appreciated! Thank you!
I have also noticed that the area around my mouth (“muzzle”)is cyanotic. I am not finding any information about it, except when it is associated with infant congenital heart disease, which, btw, my 3rd son has. I asked my pcp last time I saw her, but she didn’t have an answer. I think she is beginning to get overwhelmed with so many unusual symptoms. I am wondering if the cyanosis could possibly be ccsvi-related, and if I should be concerned. The livido reticularis has not subsided, both started at about the same time. I notice that with the motion of washing my hands or even putting on lotion or pumping my fist, the l.r. in my arms gets more pronounced. Maybe that’s normal, I don’t know. Thanks for any ideas.
Yes! This seems to be it. Although mine really does form a definite honeycomb pattern. And possible EDS (my brother, who has classic EDS “flying bird” hands, also has this manifestation) or lupus (my ANA has always tested negative, but many symptoms of) are among the differentials. We haven’t been dx’d w/EDS, but a cousin has. Since I have only known about EDS for about 2 months, I am still trying to sort through all of this. Thank you so much for your patience!
Hi Dr. D,
Thanks for the article. (and btw, in my world simplistic is a GOOD thing) I think migraine aura may fit in my case. I have had “silent migraines” with only visual auras since the full blown type of 20 yrs ago have ceased. I’m pretty sure I can rule out brain tumor, since mri’s have not shown one, but I do have an arachnoid cyst that I hope to learn more about in February when I see a new neurologist. Thanks again for your help!December 9, 2011 at 7:56 pm in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #1601
Hello Dr Diana, Just wondering if you are able to say what the reason is for feeling sick or paralyzed when lying on back? Curious! ThanksDecember 3, 2011 at 1:15 pm in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #1596
In the interest of research, and being the willing subject that I am, I decided to sacrifice myself and lie down. =) I discovered that when I lie down flat on my back, (no pillow) I don’t really notice feeling “worse” in a sick way, but I feel like I am under a lead blanket. (And actually, when I am especially fatigued, I feel that way when I sit, too) I’m not sure what you mean by “paralyzed”, but in my mind I feel like I can’t move or speak, seemingly because the “weight” is so heavy, and it would require strength and effort, that I don’t have. I laid down flat, without a pillow, and I did notice that the head and neck pain I would normally get when I sleep with a pillow on my back, I did not get. That was interesting to me. This also helped me to figure out that I DO have POTS!November 14, 2011 at 11:38 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1587
Dear Dr Di, Thanks for the info!! I am more than anxious to try Diamox, but not sure if I need to get it from my eye doc or pcp and how to approach them about it. Any suggestions?November 5, 2011 at 4:35 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1571
Wow, funny you should ask that! That has been one of my chief complaints for several years. I haven’t tried the collar yet. The question I have had about this type of headache is, why it almost always starts when I am sleeping on my back. (Sometimes when on my side, not nearly as often.) The severe pain in at the base of my skull, down my neck and down to shoulders wakes me up, but it is too late by then for the pain to subside by turning onto my side. (Sometimes it helps) The pain will continue sometimes for the whole rest of the day, and not responding to NSAIDS. That pain will at times cause nausea and an overall skeletal type pain. I have less severe pain in the same locale when I have my head down, such as when reading, writing, cooking, and using the laptop, and if I look upward, like when hanging a shower curtain or putting on mascara.(?)Oh, and even when wearing a turtleneck!(??) I had cervical MRI that doesn’t show a neck problem that would cause this degree of pain. Does this description suggest an intercranial pressure problem? I do have other symptoms that do.
Thanks so much for any help/ideas.