January 7, 2014 at 1:31 am #638KwstarParticipant
Hey everyone my name is Kristin and I’m 21.
first of all I want to say Dr. Diana THAnK YOu your videos are amazing and so helpful. I also love your sense of humor. I commented on a video you had on youtube some time back about possible hypermobility. I finally got a diagnosis for that and am now trying to find someone who specializes in Dysautonomia. I have so many symptoms : insomnia day time fatigue migraines pain joint pain diarrhea almost constant nausea with occasional vomiting very cold feet passing out vision changes convulsions seizure like and more I can’t think of right now I have other conditions too I have high functioning autism ( wihich automatically makes doctors write you off as having everything being a cause of anxiety depression etc) I have EDS type 3 I have poly sistic overy disorder (PSOS)I do have an anxiety disorder from my autism and depression but I wonder if this is all part of another disorder that causes all of this I have scolioses well had my spine is fused now and now the hardware is causing pain too I have tmj I have EBV which won’t go away I’ve had it for a year and non of the treatments have worked on me I also had lots of developmental delays when I was a baby like walking late and having my whole left side weak anyway now that I’ve told you my whole life story I want to say you bring me hope especially as things are hard right now and I’m dealing with people not understanding and the feeling of getting sicker by the day thank you!January 9, 2014 at 6:43 am #4710texan_cParticipant
Hello, new here too.
Hope to be a great member for this community.
See youJanuary 9, 2014 at 12:56 pm #4717Dr. DianaKeymaster
Welcome all newbies! 😉 One thing that occurs fairly regularly with us is increased intracranial pressure (but sometimes spinal CSF leaks can also happen, and the symptoms are not too dissimilar). If you have headaches, neckaches, nausea, dizziness, sensitivity to light, noise, movement, get motion sick easily, get a worsening of symptoms with Valsalva (straining), the use of Diamox may be very helpful! It relieved us of numerous symptoms, quite literally, overnight… I look forward to getting out some new science and medication that will also help. MANY of us are on the autism spectrum — many of us have never been diagnosed, so you’re in good company! So glad you are here… Big hug,January 10, 2014 at 9:46 am #4720
I am new to this site as well. I am 44 and was diagnosed with EDS in my 30s, which was cause to have all four of my children evaluated. Long story short, 2 of the four were definitely a yes, one was borderline, while the oldest showed no signs, but based on early history, it was thought she may have it too. She was and still is a competitive swimmer, which may have helped improve her loose joints. Sadly, when our geneticist left, I didn’t follow up with a new doctor and now deeply regret it as my youngest, age 12, is now having a lot of issues and is in bed instead of school as I type. I can’t get in with a new doctor until June, but some tests have been ordered. All of the above about her are true, along with many other things(PVCs,blood pressure issues,high carbon dioxide at night with no apnea or shallow breathing, food intolerance to name just a few.) Her MRI was actually ordered by her pulmonary doctor(she has had severe asthma as well since she was a toddler) and she admits she is not sure if a finding is significant. Here is the finding that confuses me. I will add, no signs of Chiari were found.
A few tiny punctate foci of T2/FLAIR signal abnormality are noted in the juxtacortical and deep
white matter of the right frontal lobe and in the periventricular white matter adjacent to the atria
of the left lateral ventricle, a nonspecific finding. The brain parenchymal signal is otherwise
normal. There is no associated magnetic susceptibility to suggest prior hemorrhage or axonal injury.
She is having a chart review Wednesday and I would like to be prepared. Do you know if this could be related to EDS in any manner?January 10, 2014 at 9:48 am #4721
Oh, forgot to say many thanks in advance for any replies!January 10, 2014 at 9:21 pm #4726Dr. DianaKeymaster
A few tiny punctate foci of T2/FLAIR signal abnormality are noted in the juxtacortical and deep
white matter of the right frontal lobe and in the periventricular white matter adjacent to the atria of the left lateral ventricle, a nonspecific finding. The brain parenchymal signal is otherwise normal. There is no associated magnetic susceptibility to suggest prior hemorrhage or axonal injury.
She is having a chart review Wednesday and I would like to be prepared. Do you know if this could be related to EDS in any manner?
Welcome, EDSMOM+4! 😉 I’m no radiologist, but I just saw a patient in our latest study who had a similar finding… I could be WAY off, but if you want to kick around some ideas with your doctor, I’d be tempted to ask: Do these look like ‘Dawson’s Fingers’? Can we check my daughter’s Vitamin B12 level with 4 blood tests: serum B12, serum homocysteine, MMA, and Holo-TC? (low B12 can sometimes look like demyelination) And finally (and least likely), can you rule out small stroke, small vessel disease? Has your daughter tried Zantac/Zyrtec, BTW? Does she have any symptoms of high intracranial pressure? Hang in, don’t panic, but please keep us posted! And please remember, this is a marathon, not a sprint — so please take a deep breath now and then! Big hug…January 11, 2014 at 10:48 am #4730
Thank you for your reply, Dr. Diana.
One thing that occurs fairly regularly with us is increased intracranial pressure (but sometimes spinal CSF leaks can also happen, and the symptoms are not too dissimilar). If you have headaches, neckaches, nausea, dizziness, sensitivity to light, noise, movement, get motion sick easily, get a worsening of symptoms with Valsalva (straining),
If these are the symptoms you are referring, then yes, I would say she possibly has increased intracranial pressure. Just a few weeks ago, we left a party because the noise was too much for her and she said “giving her a giant headache.” Also within the last year or so, she has started complaining of getting car sick-even on short trips. She has had chronic headaches for many years, but again, within the last year or so, migraines with vomiting and visual changes have occurred.
She is on claritin/protonix, and to my knowledge has not had her B12 levels tested(unless I’m missing it under a different name in her recent blood work.) The cardiologist mentioned dysautonomia, but I watched your video about being careful not to call it that without more than just heart symptoms.
I’m really not panicked…but maybe just maybe…slightly overwhelmed 🙂 and want to be prepared to ask all the right questions to get her the care she needs. Also frustrated, based on all the new findings, that we have to wait until June to be seen by an EDS doctor, but that is my own fault.January 11, 2014 at 12:39 pm #4732BarbaraParticipant
I just wondered about her Magnesium status:-
Several of her symptoms are mentioned in this government produced info.
Ours is a big tangled problem but if we can eat away at it, a little at a time, with various simple treatments, it helps improve our overall quality of life and enables us to focus on the ‘major players’ in this condition.
(UK)January 11, 2014 at 11:05 pm #4734
thank you, Barbara. I don’t think it has been checked either. I am going to start a list of questions to ask.
Has anybody connect vocal cord dysfunction to these illnesses? All four of my children have struggled with it. I always thought it odd that nobody wanted to connect it to anything.January 11, 2014 at 11:10 pm #4735
I know how it feels to be written off as only having anxiety and depression. It has happened to me and worse, it has happened to my kids. My son is now 16 and the hardest thing still about the past is how doctors, teachers, principals, all wrote him off(and me) as overly anxious, an attention seeker, dramatic….I’ve probably heard them all, and most recently still for my 12 year old. It is hard, but there are people that care. Sorry I invaded your post, but since I was new too…
Anyway, hang in there and we wish you and everyone on here the best.January 13, 2014 at 11:56 pm #4739kathyinilParticipant
Hi there everybody, new to the forum. I am 49 now and have been dealing with bazaar symptoms for almost 5 yrs. In 2009, I was in a minor car accident, simple whip lash and from that day on, my life changed drastically! I developed or should I say, was predisposed to a condition called Arterial Thoracic Outlet Syndrome. It’s after that, I had to begin this long journey (by myself) Dr’s with any knowledge of my conditions were very hard to find! In the last year, I have been diagnosed with EDS, hypermobility type, Autonomic Dysfunction, Chari Malformation, Myofascial Pain syndrome, and god knows what’s next. I came across Dr Diana’s website and just started to cry. I have so many strange symptoms, the worst being these spells for the lack of a better word, that come on daily as soon as I sit down. The left side of my tongue goes numb and then it feels as if it goes into my throat and travels on up to my occipital nerve affecting my vision and eyesight. Tinnitus with drainage, my nose drips like a facet when I bend forward. If I turn my head to the left for to long, these spells just get worse. I can’t sit at the computer without these spells or go into a Dr’s office or any store with fluorescent lighting, I spell. Dr Diana, I’m really starting to wonder if CCSVI in the Fundus (?) spelling and External Communicating Hydrocephalus can play a factor. Any input, would be highly appreciated!!
Thanks for listening and feedback would be awesome….:-)January 14, 2014 at 12:06 am #4740kathyinilParticipant
FYI, Mayo Clinic in Minnesota told be that I had sotomazation disorder. Basically, I was a hypochondriac. Thank god a vascualar Dr there at Mayo saw my hyperflexd fingers and ordered genitic screening. See,even a blind squirrel can find an acorn every now and then!!
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