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Lab-Scientist-LadyParticipant
This is the lab that my test went. I will let y’all know what the results are when they come back. My geneticist drew 2, 7 mL EDTA tubes of blood. She is running the tests for both the classical form and the vascular form. Dr. Diana I had a skin biopsy done here by my dermatologist and she sent my punch Bx to UTSW. It came back positive for a connective tissue disease.
Shonda .Lab-Scientist-LadyParticipantIt does sound like EDS. It is hard to get an diagnosis, but make an appointment with a geneticist and give them a complete medical history of every thing you can remember no matter how small. He may have a nerve that is getting pinched by his hypermobile joints. If you can get some physical therapy to relieve the pressure on the nerve maybe regain function of his big toe.
Lab-Scientist-LadyParticipantI don’t know the answer to your questions, but as a kid I had the same thing happen with my tongue and mouth. Since I was a kid I never told anyone, but I remember it happening at weird times. It would even happen in the middle of the night. The sensation was so weird and uncomfortable that I still remember how it felt. It would rarely happen when I ate, but the only food I am allergic to is swiss cheese. I also, have bad reactions to bug bites. Mosquitoes love me and I get huge itchy welts from them, and my children do too. Now that I know I have EDS I know it is all related. Maybe Dr. D can answer you. I want to know the reason too. Is it common for those with EDS to be Mosquito magnets?
Lab-Scientist-LadyParticipantI have read some where that persons with EDS can rapidly metabolize some things like anesthesia, but slower on other things. I also read that there is a gene that can be tested for to tell you where you fall on metabolizing things. I think with all our issues our liver, small bowl, etc don’t work as well as a healthy person. I personally have trouble absorbing vitamins, iron, calcium, etc., but I rapidly metabolized anesthesia and painkillers. I know it takes a long time to rid your body of heavy metals because your liver and spleen have to clean out all the red blood cells that are poisoned by the metals. Your body replaces only 1% of its red blood cells each day. Therefore, it will take over 100 days to replace all your red blood cells. Also, if your bone marrow is also affected it will take even longer to rid your body of the heavy metals. The bone marrow is where all your red blood cells come from. I also, remember a study that showed that women that intend to get pregnant should avoid fish that contain high levels of mercury for a year prior to becoming pregnant because the mercury stays in your system that long
Lab-Scientist-LadyParticipantOh okay. Maybe you have hydrocephalous like so many of us EDSers.
Lab-Scientist-LadyParticipantOr it is a picture of someone with Dandy Walker syndrome?
Lab-Scientist-LadyParticipantIt almost looks like there is a shunt in place to drain the excess CSF. So my guess is hydrocephalous with a shunt, and maybe the shunt failed.
Lab-Scientist-LadyParticipantI have problems with smells too. I am a super smeller and a super taster. I guess it is an EDS thing.
Lab-Scientist-LadyParticipantI am not a radiologist, but you can only see Aneurysms with a MRA or CTA. They look like extra CSF pooling. Do you know the answer?
Lab-Scientist-LadyParticipantI 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.
Lab-Scientist-LadyParticipantSorry 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.
Lab-Scientist-LadyParticipantAlso remember men are less flexible than women. Therefore, that may be why your mom is more flexible.
Lab-Scientist-LadyParticipantI 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.
Lab-Scientist-LadyParticipantI not sure if I do or not. I get UTI like pain from time to time. It usually goes away, but the microbiologist in me checks to see if I have an infection. I do get rashes all the time and I have Livedo reticularis, eczema, keratosis pilaris, etc.
Lab-Scientist-LadyParticipantVascular 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.
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