Lourdes,
Wow, it has herniated a lot since May of last year. I am not a doctor, but I would say in my opinion maybe the cyst is causing the herniation. Your doctors are aware of this, but if you are not sure at this point, getting more opinions are your option too, I have never heard of MRI’s used to diagnose EDS, maybe possible, but the evaluation they do can determine if you do or not have EDS.
Diagnosis for both Ehlers-Danlos Syndrome Hypermobility-Type and Joint Hypermobility Syndrome is by clinical evaluation. Below are some tests that patients will often be asked to demonstrate in order to diagnose hypermobility. Your GP may also take details of any family history of hypermobility and/or carry out blood tests and X-rays to rule out other conditions (see the ‘Symptoms that Can Involve Symptomatic Hypermobility’ page, under ‘Understanding EDS-H /JHS’ on the main menu)
To the non-specialist clinician or GP, the tests shown above are the easiest way to check for hypermobility, as the majority of hypermobile people will be able to carry out (either now or as a child) at least some of these. It is important to remember however, that not all hypermobile people can perform these positions, as other joints in their body may be the ones that are affected.
It is likely that your GP will refer to the Beighton / Brighton Scoring System (the basic diagnostic check-lists for diagnosing joint hypermobility), in order to assess whether a patient has Ehlers-Danlos Syndrome or Joint Hypermobility Syndrome. These checklists are basic and should be used only as a rough guideline.
‘The Beighton Score was originally devised purely for a general study into hypermobility in populations. For this task it was well suited, being quick and easy to perform on large numbers of people. Unfortunately the test was seized-on by clinicians as a diagnostic test for Hypermobility Syndrome’ (quote: Prof. R Grahame).
Neither test covers many of the joints that some people with EDS-H /JHS experience hypermobility in, for example shoulders that dislocate, ribs that ‘pop out’, hips that slip, vertebrae that move, sprained ankles, excessive mobility of the lumber, dorsal or thoracic spine, TMJ problems (jaws that slip), multiple joints in the fingers and wrists, and many more. Clinicians often tell people that they cannot be suffering from JHS or EDS-H because they only score 1 or 2 points on the Beighton / Brighton Scales, when, in fact, the patients would have scored far higher if other joints in the body had been checked as well.
A parent of children diagnosed with Joint Hypermobility Syndrome, who herself has the condition,
explains:
‘My daughter can’t touch her thumb to her wrist let alone her palms to the ground, but my son and I both can. My daughter’s elbows, shoulder, hips and thumbs ARE hypermobile. My son scores very low number on the Beighton scale; he can’t touch his thumb to wrist, but he can bend all his fingers together up to 90 degrees backwards, and also has hypermobile shoulders, hips, patella and other joints!’
Another incorrect, but widely held view, is that if you have Ehlers-Danlos Syndrome Hypermobile Type your skin can be stretched out like elastic from either side of your neck or other areas of your body. However, ‘extreme’ elasticity of the skin is usually linked with only one of the six main types of Ehlers-Danlos Syndrome. It is not a common feature of the Hypermobile form of EDS.
Some people with Ehlers-Danlos Syndrome Hypermobility-Type may be able to stretch the skin more than average on areas such as the backs of their elbows, or the backs of their hands, but extreme skin hyperlaxity is uncommon.
From this, it is easy to see why diagnosis can be so difficult. If you suspect EDS-H /JHS and do not feel you are being properly assessed, ask your GP or consultant for a referral to a centre specialising in the condition (see ‘Resources and Links’ section of the main menu).
A hypermobility-specialist will be able to check all the other joints in the body to check if you are hypermobile (e.g. the cervical, lumber and thoracic regions of you spine, your finger joints, your toes, hips, shoulders etc.) as well as taking a detailed history relating to associated problems such as problems with the body’s organs: skin, bowel, bladder, heart etc.
In 1997, at the Villefranche Ehlers-Danlos Conference, each Ehlers-Danlos Syndrome Type was re-classified from the numerical system (e.g. Type I & II, Type III, Type IV etc.) to a descriptive classification (e.g. Ehlers-Danlos Syndrome Hypermobility-Type, Ehlers-Danlos Classical-Type, Ehlers-Danlos Vascular-Type etc.)
When searching for information to help aid diagnosis, it would be wise to use this ‘descriptive’ classification, as the information is likely to be more up-to-date.
‘If your clinician is still using the old numerical system, maybe it should be seen as a warning sign that they may not have remained up-to-date with current findings.’
The Brighton / Beighton Score
As mentioned above in paragraphs 4 and 5 above, these scores are useful in clinical evaluation, but were only originally intended as a quick test, devised purely for a general study into hypermobility in populations, and are therefore, limited in their diagnostic capability. Joint hypermobility can also be difficult to measure because the extent of the condition varies from person to person and depends on age, gender, family, and ethnic background.
Joint Hypermobility Syndrome is diagnosed if you display (or have past history of) two of the following major criteria, or one of the major and two of the minor criteria, or four of the minor criteria. Two minor criteria will suffice where there is an unequivocally affected first-degree relative.
Score 1 point if you can you bend forward from the waist, with your knees straight and put your palms flat on the floor
Score 1 point if you can hyperextend your left elbow backwards (see picture above)
Score 1 point if you can hyperextend your right elbow backwards (see picture above)
Score 1 point if you can hyperextend your left knee backwards (see picture above)
Score 1 point if you can hyperextend your right knee backwards (see picture above)
Score 1 point if you can bend your left thumb back to meet your forearm (see picture above)
Score 1 point if you can bend your right thumb back to meet your forearm (see picture above)
Score 1 point if you can bend your left little finger at 90 degrees towards the back of the hand (see picture above)
Score 1 point if you can bend your right little finger at 90 degrees towards the back of the hand (see picture above)
To fit the criteria required to be diagnosed with Joint Hypermobility Syndrome you would need:
MAJOR CRITERIA
A Beighton score of 4 or more, out of the 9 possible points (either currently or historically)
Arthralgia (joint pain) for longer than 3 months in 4 or more joints
MINOR CRITERIA
A Beighton score of 1, 2 or 3 out of 9 (0, 1, 2 or 3 if aged 50+)
Arthralgia (joint pain) for more than 3 months in one to three joints, or back pain for more than 3 months, spondylosis, spondylolysis/spondylolisthesis
Dislocation/subluxation in more than one joint, or in one joint on more than one occasion
Soft tissue rheumatism. More than 3 lesions (e.g. epicondylitis, tenosynovitis, bursitis)
Marfanoid habitus (tall, slim, span to height ratio of more than 1.03, upper: lower segment ratio less than 0.89. Arachnodactyly (i.e. abnormally long and slender fingers in comparison to the palm of the hand) - this can be tested by looking for positive Steinberg/wrist signs: Can you form a loop around the narrowest part of one wrist, using your thumb and little finger from your other hand and overlap that little finger and thumb? Can you place your thumb across your palm and, when closing your fingers over the top, still see a significant amount of the tip of your thumb?
Abnormal skin: striae, hyperextensibility, thin skin, unusual scarring
Eye signs: myopia, sometimes drooping eyelids or antimongoloid slant
Varicose veins or hernia or uterine/rectal prolapse
The criteria for Major 1 and Minor 1 are mutually exclusive (i.e. cannot both be true at the same time), as are Major 2 and Minor 2.
Joint Hypermobility Syndrome is excluded as a diagnosis if you are known to have Marfan or Ehlers-Danlos syndromes (other than the EDS Hypermobility-type), as defined by the Ghent 1996 (8) and the Villefranche 1998 (9) criteria respectively).
Jenn