Do you have Ehlers-Danlos syndrome? (possible link with MS)
There is a possible link between EDS and multiple sclerosis. It could be interesting to see how many forum members have been tested for EDS?
Ehlers—Danlos syndrome and multiple sclerosis: a possible association
Ehlers-Danlos syndrome (EDS) has various neurological manifestations. Here we present an association of EDS with multiple sclerosis (MS). Four MS patients from a total of 1892 followed up at our MS outpatient clinics had EDS. This frequency suggests 10 - 11 times increased prevalence of EDS in MS patients compared with the general population (P = 0.02). Suggested implications include a possible causal relationship on a connective tissue level with a higher susceptibility to MS in EDS. Diagnostic and management considerations are important in coexisting MS and EDS. Our patients had relatively florid lesions on brain MRIs and typical course and features of MS. Multiple Sclerosis 2008; 14 : 567 - 570. http://msj.sagepub.com
Very interesting abstract! My middle daughter was tested for EDS and all of my children and I are hyper-flexible. However, I do not have florid lesions on brain MRIs and I do not have a typical course of MS.
I will have to research this a little more. Thanks for posting the abstract!!
Interesting, right? Here are additional neuromuscular manifestations of EDS...
... reduction of vibration sense
... axonal polyneuropathy
... muscle weakness
... muscle pain
... easy fatigability
"Neuromuscular involvement in various types of Ehlers-Danlos syndrome"
Ehlers-Danlos syndrome (EDS) is a clinically and genetically heterogeneous group of heritable connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Muscle involvement is plausible based on recently discovered interactions between muscle cells and extracellular matrix molecules; however, muscle symptoms are only sporadically reported. We designed a cross-sectional study to find out whether neuromuscular features are part of EDS.
Standardized questionnaires, physical examination, nerve conduction studies, electromyography, muscle ultrasound, and muscle biopsy were performed in 40 EDS patients with the vascular, classic, tenascin-X (TNX)-deficient type EDS, and hypermobility type of EDS caused by TNXB haploinsufficiency.
Muscle weakness, myalgia, and easy fatigability were reported by the majority of patients. Mild-to-moderate muscle weakness (85%) and reduction of vibration sense (60%) were common. Nerve conduction studies demonstrated axonal polyneuropathy in five patients (13%). Needle electromyography myopathic features in nine patients (26%) and a mixed neurogenic-myopathic pattern in most (60%). Muscle ultrasound showed increased echo-intensity (48%) and atrophy (50%). Mild myopathic features were seen on muscle biopsy of five patients (28%). Overall, patients with the hypermobility type EDS caused by TNXB haploinsufficiency were least affected.
Mild-to-moderate neuromuscular involvement is common in various types of EDS, with a remarkable relation between residual TNX level and degree of neuromuscular involvement, compatible with a dose-effect relation. The findings of this study should increase awareness of neuromuscular symptoms in EDS patients and improve clinical care. They also point to a role of the extracellular matrix in muscle and peripheral nerve function.
My 2 girls have the Type 3 (hyperflexible) Ehlers-Danlos Syndrome. They are lucky that they are only mildly affected (at this time). We caught it early so hopefully we can prevent progression.
Here is a Discovery Health clip on it. http://www.youtube.com/watch?v=PunQu-bId1M
It is a collagen deficiency. Collagen is the "glue" that holds your body together. 80% of your body is made up of collagen. The hyperflexibility is because the tendons and ligaments are too stretchy. This is what allows the subluxation and dislocations. They do *not* get the warning signs that they are bending their joints too far the wrong way.
The Vascular type is the *really* scary one. That is where the collagen is deficient in things like blood vessels and internal organs. People with this type have problems with spontaneous rupturing of blood vessels and organs. Or the ruptures can be caused by a simple trip and fall to the ground.
One of the problems with EDS is that there are no visible signs of the disease and the more severely affected have more pain. However, Doctors can never find evidence from x-rays or other tests that would cause the pain. So for the most part accuse patients of being hypochondriacs.
However, the *main* problem is so few Doctors know anything about it that it often gets overlooked and a diagnosis is never achieved. Often there are no physical signs of anything wrong. The people who have it grow up think *everyone* is like them or they think they're just "klutzy".
I was diagnosed with EDS, Hypermobility Type, last November, and am now beginning evaluation for MS. I had assumed the numbness I recently developed in my legs and hands were from pinched nerves, but MRIs and EMG testing have failed to support this as a cause, so my Orthopedic Surgeon referred me to a Neurologist.
I had never considered the possibility of having MS; I already have one debilitating disease, why would I suspect another?!? After reading up on MS, however, I realize I have been ignoring many of its symptoms, rationalizing them to be the result of “fatigue” or “not eating right” (i.e. double vision, bowel disorders, sexual dysfunction, dizziness, spasticity, memory problems, and extreme fatigue, just to name a few).
I’m happy to finally have names for what is wrong with me (no, they are NOT hypochondriac and malingerer!)
Can you please tell me who made your diagnosis? I have also been diagnosed with MS for 10 years. I live in Cleveland.
My MS is benign, but the rest of my body is falling apart. No one will listen to me.
My neurologist tells me I'm doing great.
I called the genetics office at the Cleve Clinic and they won't see me without a referral. I have defiantly been labeled at the Cleveland Clinic as someone who is not accepting their diagnosis.
My rt eye started to sink and fall along with the rest of my face. I have had numerous surgeries. I have labral tears in both hips. My hair is falling out. I have constant pain. The veins in my arms bulge out and are painful. I don't sleep. No one will listen to me.
I have Ehlers Danlos ( confirmed at NIH ) , Multiple Sclerosis ( confirmed at UCLA , UCDavis , NIH ) and chiari malformation ( surgery ucla ) /eds ties discovered at the Chiari Instutute NY - see the study published by Dr's Milhorat , Bolognese , Francamano , ect a few years back now .
ednf.org 's support group effort at Inspire has quite a few of us with various combo's of the above active = one place I've found keeping up with what ties seem known /found and under consideration now .
I'll add-family hx includes a mother with both ms and eds , and my brother clearly has both ( formal dx of ms , hasn't had full EDS workup =but has many signs =symptoms and medical hx tied issues . )
Was looking for any newer science , and stumbled on this = I'd sugest ednf.org =inspire to anyone seeking peers or possible info newer than what is here .
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