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Hello all. My name is Ashley and I am 26 yrs old. I have two children ages 4 and 7.5, both boys. My journey with ehlers-danlos syndrome started when I was young. I was always twisting my ankles and spraining something. My double jointed thumbs kept me from getting picked in heads up 7 up in school because the kids were grossed out and didn’t want to touch my thumbs. I was not diagnosed back then. As I got older I was bad at sports because I was always getting hurt. One day I started getting these mental fogs that would come and go, I was 11 then, and still deal with it to this day. My high school years I was a cheerleader, splits were easy for me and backbends too. I frequently rolled my ankle or worse my knee would dislocate. I became very afraid of my knee dislocating because it is excruciatingly painful and started avoiding bending down on my knee, or twisting it to the left. I still was not diagnosed despite many doctors appointments. My oldest son was premature at 32 wks due to pprom. I had heavy bleeding and tore horribly even though he was only 4 lbs 6 oz. I then became a CNA. I was always in pain and got two hernias from lifting. I was in a car accident and broke my back when I was 3 months pregnant with my youngest. I had to learn to walk again and it sucked to say the least. My youngest was also born early. Cervical incompetence led to a amniotic fluid infection. He was born at 33.5 wks gestation weighing 4 lbs 12 oz. again I ripped and needed 8 stitches. I also bled heavily again. After that it was just one back issue after another. I have kephosis, si joint disease, degenerative discs, spina bifida occulta, facet joint syndrome, and other things I don’t remember right now. All thought to be from my t12 burst fracture. I have ridiculopathy in my legs and weakness and tingling sensations in my hands. Muscle pains, joint stiffness and swelling and fluid retention. I have severe anxiety. I have always had hypotension. Some medications drastically drop my bp. I hate going to the dentist because the local shots do nothing to ease my pain. I lost a pregnancy last year due to hemorrhaging. Last month I was found to have IIH with empty sella syndrome. I have mild papilladema due to the iih. The MRI was done to determine cause of my headaches and glactorreah. I am waiting to see an endocrinologist to see if my squished pituitary is causing my hormonal problems such as excessive sweating, acne, cold intolerance, and the glactorreah. My diagnosis came when I seeked help with my urinary symptoms a week ago. They did a ct scan of my kidneys to figure out where blood and protein was coming from. I have a kidney stone, but they also saw that I have diverticulosis. This raised a flag in my doctors mind due to my age. My new doctor has been wonderful trying to figure out what’s been going on with me. I’ve seen so many doctors and was so tired of them saying I have all these somatic conditions. I am not a hypochondriac. You can visibly see most of my issues, or see them on scans. I have to go see a geneticist. I am currently on 250 mg of diamox, it was lowered as is was causing syncope. I also take Xanax. I take mobic as needed for joint pain, helps a little. Nothing else seems to work. My question is can they tell the type based on symptoms or do they tell by doing a genetic test? I am unsure of my biological fathers genetics, as I never met him. My father adopted me when I was one. My mother passed away when I was 15 so I can’t ask her anything. What health problems should I be aware of? Are all my symptoms common in people with eds? Anything else you could tell me would be greatly appreciated. Thank you, -Ashley-
Welcome Ashley,
Blimey, you’ve been through the mill girl! You’ve had the full flavour of how mainstream doctors seem to pay little regard to the blatant signs and symptoms.Rest assured you’re among friends here. I’m going to repeat something I heard on TV last night, which I thought was very fitting, it went something like:-
“I look upon my friends as a mattress. When I’m hurting, they are always there to help nudge me into a more comfortable position”.From reading through your experiences, my initial thoughts turn towards magnesium deficiency amongst many other things but, you have to start somewhere and, believe me, every little helps! See if you recognise many of your symptoms in this document:-
Regards
Barbara
(UK)Thank you for your reply. I have another appt with rheumatology so I’m hoping they have more to tell me as my doctor has never had anyone with it before. I love her and she is making sure that I get the appropriate appointments. Would a geneticist be able to help any, or is one even needed once a diagnosis has been reached? I told my doctor about the magnesium and she took blood to run today. I do have vitamin d and calcium deficiency even though I go in the sun and eat calcium enriched foods. Is this normal with eds or just another screwy thing with my body. I am so relieved to finally have a diagnosis so I can figure out how to make myself feel better instead of wondering what’s wrong. Best wishes, Ashley.
Welcome Ashley,
Blimey, you’ve been through the mill girl! You’ve had the full flavour of how mainstream doctors seem to pay little regard to the blatant signs and symptoms.Rest assured you’re among friends here. I’m going to repeat something I heard on TV last night, which I thought was very fitting, it went something like:-
“I look upon my friends as a mattress. When I’m hurting, they are always there to help nudge me into a more comfortable position”.From reading through your experiences, my initial thoughts turn towards magnesium deficiency amongst many other things but, you have to start somewhere and, believe me, every little helps! See if you recognise many of your symptoms in this document:-
Regards
Barbara
(UK)Hi Ashley,
Two things I need to mention, one is that a blood test is not affective for checking cellular Magnesium Level, that’s probably why so many people with this deficiency escape detection, watch the videos:-http://prettyill.com/videos/watch/the_magic_of_magnesium
or one by Dr Mark Hyman:
Secondly, I’ve read that you must discuss taking Magnesium with your doctor first, if you have kidney or heart problems. Also, from what I gather, Epsom Salts baths will help correct a deficiency, only if it exists.
Regards
Barbara
(UK)
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