July 5, 2013 at 6:58 pm #479
First, my Mother went to John’s Hopkins for a diagnosis of hypermobility EDS. I went to WVU thinking they would diagnose me with the same thing but they didn’t they diagnosed me with classical. The lady that diagnosed me said that my Mom has Classical too she just doesn’t have as prominent symptoms to diagnosis it as me. It leaves me wondering…
My grandmother who had all the same symptoms died a sudden death 2 years ago…
They say it’s not vascular but two doctors gave us two different diagnosis’s. Opinions?
Second, I have been diagnosed after excruating pain and a stomach biopsy of elevated mast cells in my stomach. I am waiting to see the hematologist this week after many days in the hospital being sick from it. They are saying it is Systemic Mastocystosis (however, they have never had a patient with this so it is new to them as well) since it is my stomach…is there still a chance it could be just MCAS/MCAD or would it have to be Systemic due to it being in an organ (stomach)? Opinions?
I’m trying to get to the bottom line of all this after suffering for many, many years. It has taken Dr. Diana, Prettyill.com and this blog for me to FINALLY get answers. So I am counting on you all 🙂 b/c my doctor’s so far don’t know anything and keep giving me the run around.
Thanks in advance!July 5, 2013 at 7:09 pm #3867
Also, let me add that I have POTS and didn’t know there was such thing as Hyperagenergic but always wondered why my blood pressure would rise instead of fall & such. I had my doctor run the 24 hour testing and blood work for that and most of it came back elevated. I don’t seem him until next Friday but am wondering if that means I have Hyperagenergic POTS then?July 5, 2013 at 7:19 pm #3868
Vascular can be diagnosed with a genetic test. Did they do that on you or your mom? Which type do you believe you have? There are so many overlapping symptoms.July 5, 2013 at 7:35 pm #3870
I originally thought I had hypermobility like my Mom, but it made since when the Geneticist told me bc of my POTS and MVP and the way my skin is and bruises I had Classical. Makes sense, so I figured they just misdiagnosed my mother. It just worries me that I could still have Vascular although both Geneticist told both my mother & I that I shouldn’t worry we have too many other symptoms that it couldn’t be vascular — and they wouldn’t even offer to do the testing.July 5, 2013 at 8:14 pm #3871
I originally thought I had hypermobility like my Mom, but it made since when the Geneticist told me bc of my POTS and MVP and the way my skin is and bruises I had Classical. Makes sense, so I figured they just misdiagnosed my mother. It just worries me that I could still have Vascular although both Geneticist told both my mother & I that I shouldn’t worry we have too many other symptoms that it couldn’t be vascular — and they wouldn’t even offer to do the testing.
I don’t know my type yet, but I hope the check me for the vascular form. There are a lot of overlapping symptoms and it is possible to have more than one type. I hope you still see a cardiologist for monitoring. All of us EDSers have a risk of vascular rupture.July 5, 2013 at 8:16 pm #3872
Also remember men are less flexible than women. Therefore, that may be why your mom is more flexible.July 5, 2013 at 8:30 pm #3873
I’m actually a female! No worries though, I get it a lot b/c Ashton is a uni-sex name. 🙂July 5, 2013 at 8:32 pm #3874
Oops, didn’t see your post before that one, sorry. I do see a Cardiologist regularly. I believe that we all probably do have the Classical type and my grandmother may have possibly just had a vascular rupture which led to her sudden death? That’s my theory & I guess I will stick to it. 😉July 5, 2013 at 8:40 pm #3875
Sorry about that. Do you have kids? I have three and they all show signs. My daughters name is both a girls name and a boys name. My dad name is the same. Does any other relative have a diagnosis of EDS? I am the first in my family with the diagnosis, but I know others that have it. I am the worst one affected by it.July 5, 2013 at 8:45 pm #3876
I am currently in the ED, because of chest pain. I hope the run a CTA to R/O a vascular event. I had a brain bleed a few years ago, so I always need to be careful.July 5, 2013 at 8:59 pm #3877
Oh wow! I hope it’s nothing serious. I just got home from the hospital from a 4 day stay due to the mast cell stuff. I do have a 7 year old daughter who was just diagnosed this past Friday with the Classical type (we have had her in the hospital twice this year with chest pain) along with me. My sister shows all signs and is waiting for her appointment. My Mom was the first one in my family diagnosed. I have an Aunt waiting on her diagnosis also. We all had to go to different doctors for insurance reasons. I wish we could have all went to the same one!July 12, 2013 at 10:42 pm #3891Dr. DianaKeymaster
I just wanted to add that I strongly disagree with some of the experts that say people with Classical or Hypermobile forms do not have vascular issues. I see that TONS of us either clot or bleed, develop aneurysms, etc. I’m researching this now, as I believe we can prevent these horrible sequelae (unless we do have the vascular form). If you are afraid that you may have the vascular form, I’d suggest you scope out some pics — it may be very reassuring. Vascular folks DO have a “look” to them — pinched, thin noses, thin hair, very little subcutaneous fat on their faces, visible chest veins, etc. Hope this helps!July 14, 2013 at 1:32 pm #3896Dr. DianaKeymaster
Hi Everyone, For those of you following some of my research and what is working for myself and my kids, I wanted to let you know that we are taking Quercetin and Ketotifen, rather than Sodium Cromolyn now (for many reasons I will explain soon! Ketotifen is available through Canada and it is taken twice a day (that 4 times a day dose of Cromolyn is a killer, isn’t it? How’s everyone else doing? Big hug… 😉July 14, 2013 at 2:15 pm #3898
I am glad to know that I am not the only one who believes that we have vascular issues, I am almost positive my Grandmother died from EDS. I am also on Cromolyn. IT IS A PAIN IN THE BUTT! I live in the US so I am not exactly sure how I should get my doctor to go about Ketotifen. Is Quercetin easily available too?
Also, what are some good supplements for EDS (I was told just vitamin C)? I took a multi-vitamin and pro-biotics before being diagnosed with EDS, & Mast Cell Disorder (still trying to figure out if it is MCAD or Systemic Mastocystosis) I just had a bone marrow biopsy on Tuesday! WORST THING EVER!!!
I can never thank you, Dr. Diana, for all the research you have put into this. It feels so good to finally be getting SO many answers after SO many years of suffering! 🙂
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