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December 23, 2016 at 5:54 pm #1070HealthseekerParticipant
I was very pleased to find his forum, and connected website! I was led here after investigating possible causes for my recent spontaneous cartoid dissection and other symptoms. When I read about the numerous symptoms people with EDS experience, I could recognize many of them. I am a 37 year old female, who have functioned well most of my life, but the last 3 years I have only partly been able to function in my job/ family. I turn to you in desperation for advice. Here are my symptoms:
Symptoms since childhood
Widespread strechmarks from age 11
Many sprains of finger joints/ ankles
Inability to sweat till age 18, very modest sweating since then
Cold hands/ feet
Flushing ( face, neck, chest)
Heat/ cold intolerance
Pain in hips
Easy bruising/ slow wound healing
Back pain( lumbar/ th)
Thoracal Kyphosis diagnosed age 16
Very prominent veins on hands
The last 3 years experienced:
Sudden episodes of occipital headache, irregular heartbreats, heavy feeling in chest, extreme burping, severe chills, followed by fatigue and dizziness
Pain in wrists,shoulders, knees, hips, ankles and occationally also fingers
” weak knees”, walking afftected
Sneezing without ” the flu” or known allergies
General fatigue/ weakness
Popping/ cracking sounds in joints
Feeling of ribs out of place
Sudden severe ear pain
Various nevrologic symptoms
Good/ bad days
After a lot of tests and MRIs the doctors are still clueless.. I suspect they will send me to a psychiatrist soon, and I have lost my cofidence in them. In my self as well, and I haven’t told them that I suspect I might have EDS. To be honest I haven’t dared to tell them all my symptoms either, I fear they will label me with some sort of severe psychiatric illness. The doctor who found my dissection asked if I had hypermobile joints, and I said no because I have never considered myself as flexible. I regret that, since I have found these signs:
Thumb to arm, both sides
5 th finger bends to 90 degrees, both sides
Positive wrist sign ( thumb and littlefinger overlap)
Arm span exceeds hight
Long slim limbs and fingers
Soft skin in face, hands look old
Skin maybe slightly more flexible than normal
In my country I have found that they only use the Beighton scale, and 5 points are required, I only have 4 on this.
Do any of you have any suggestions about how I should proceed, and could I have EDS even if I have only 4 points on the Beighton but several other symptoms?
Replys will be much appreciated!
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