Not MS - but Ehlers-Danlos Syndrome, hypermobility type

Hi Everyone

Back in Feb 2010 I was told that there was a chance I could have MS. However, all the tests and scans that followed did not show any evidence that this is what was causing me all my symptoms I was experiencing. Then, in Feb 2011 I was referred to a rheumatologist who said I was ‘hypermobile’. My sister then saw the same rheumatologist and now we have both been diagnosed with the above genetic disorder. I have since been told that many people are mis-diagnosed with MS when in fact they have EDS, as a lot of the symptoms are similar.

Anyway, I just wanted to thank all those that gave me support back in those scary times, so ‘thank you everyone who took the time to answer all my posts’ and I hope you all find the answers that you are seeking.

Take care and all the very best, Janice. ;0)

1 Like

Hi Janice.

Glad to hear that you have got a diagnosis - it is good to get some closure.

My cousin has EDS - unusually, two of the rather nasty types :frowning: so I know a little about it. I’m hypermobile and once began the process of investigating EDS but was talked out of it by a consultant (“no point” - it was a long time ago though). As there’s no doubt about my MS diagnosis, I’ve never revisited it as a possibility, but I do think of it from time to time.

Not that any of that is relevant mind you! LOL!

I hope you get some proper support to deal with whatever your EDS brings you. Lots of physio in your future I suspect? Please stick with it!

Good luck to you and your sister.

Karen x

Glad you got a diagnosis… better to know what you’re dealing with.

Good luck for the future.

Pat x

Hi Janice

Can you enlighten me as to the common features of the condition and what the heck is hypermobility, surely no relation to hyperactivity, and will it stop you qualifying for a bus pass?

Hi Janice,

I too have been to the rheumatologist today and told that I am hypermobile & this is what is causing my chronic pain. The rheumatologist is also doing lots of additional blood tests and a nuclear bone scan but may I ask what tests they did do diagnose you with Ehlers-Danlos rather than simple joint hypermobility syndrome? I only ask as I wonder if this is the cause of my own hypermobility.



I came across this post and wondered if the posters knew that there is a known link between Ehlers-Danlos Syndrome and MS? The incidence of MS in the general population is believed to be 1 in a 1,000. This falls to 1 in 100 for those diagnosed with EDS. Researchers believe that there is a possible causal relationship on a connective tissue level. (listed under ‘Other symptoms and problems’)

A high proportion of EDS patients also have Chiari malformation, tethered cord, dysautonomia etc. all of which can mimic MS.

This has intrigued me, i was diagnosed cis last year after having problems and a positive MRI, my family is plagued by EDS, 2 of my sisters and 3 of my nieces have been diagnosed EDS and my nephew with marfans, this has now moved on to the later generation of my great nieces and nephews with various problems, like a total idiot i never mentioned any of this on my neuro appt ! i have another appt in Feb and i will be bringing this up

A recent study found 10 folks increase of MS in patients with Ehlers Danlos Syndrome

another link