Newbie suspecting EDS needs advice

[Healthseeker]

Hi all!

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

Drop- attacks
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
Cronic constipation

The last 3 years experienced:

Cronic nausea
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
Occipital
Dizziness
” weak knees”, walking afftected
unsteadyness
Sneezing without ” the flu” or known allergies
Hoarse voice
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
Sitting W
Reverse namaste
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!

[Author]

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