Finally got some answers

[Annemac]

Went to the hospital Wednesday and I got the diagnosis I was expecting I have EDS type 3 but Bristol is trying to move away from calling it that as people seem to panic when they are told they have EDS , because as soon as they are told it could be EDS they look it up on the internet and see some of the things that EDS can cause and they panic. So Bristol is now calling EDS type 3, hyper mobility syndrome, which I was diagnosed with about three years ago so was told I had a wasted journey. What do your doctors call EDS hyper mobility or EDS type three or hypermobility.

[cyberbarn]

My son was diagnosed by a paediatrician 7 years ago and she put EDS type 3 and Hypermobility syndrome on the letter to cover both. There is a growing consensus that EDS hypermoibility type (3 is the older version) and Joint Hypermobility Syndrome are the same things because clinically they can't be differentiated. There is no genetic or molecular test for them.

However next year they will be publishing a new nosology, that is classification, so it could all change again.

Just remember, you are the same person regardless as to what diagnosis they give you. Sadly our bodies don't read the text books which try to put artificial constructs on them!

[chrissie-portland]

Yes, my 24 year old son had assessment there in September. Mr Jenkinson was very professional and compassionate. He diagnosed JHS and Fibromyalgia. Definitely have an ethos there of minimising the psychological impact of diagnosis. I was hoping they would address his 13 severe gut problems. But no. Straight into an hour assessment woth physio. Again very professional and compassionate, but emphasis upon treating the Fibromyalgia as "the treatment is the same for both." Treatment was talking and establishing good sleep and activity hygiene to minimise fatigue. It did improve my sons attitude and quoshed many "whys". He returned after a month for more talking. Physios rang him a couple of times now he is discharged! Have they improved him? Settled his mind: Yes. Is he any better so that he can have a productive life: No! We despair. Fortunately in the interrim he had FINALLY gained consultation with a gastroentrologist! Hoorah! 13 years is a long patient wait. She confirmed he was suffering more than IBS, probably SIBO, leaky gut, and collitis. He begins tests is January. I spoke with EDS Support in relation to my never expanding issues regarding EDS, and was advised that I ask my cardiologist to refer to London EDS specialists, and that my son ask Bristol to refer him to London EDS specialists. It is there that

[chrissie-portland in reply to chrissie-portland]

Sorry techno problems! It is there, London, that we can potentially gain significant improvement. Additionally I highly recommend Ehlers Danlos Syndrome and The Cusack Protocol FB for a nutrional enhancement and education. The members are all very wise and informative, and it is here that I have gained all my insight and psychological support. I had import problems in September, so I intend to try the protocol again in Jan. Thank goodness I proved I had PoTS and demanded to see Dr Bruce, cardiologist. It was she who diagnosed me, and referred my to other specialists for investigation into the other parts of my body that are deteriorating. If it were left to my GPs, Rheumotologist, neurologist, I would still be rotting in bed in shaking agony!

[Tillyray in reply to chrissie-portland]

Hi chrissie.Can I ask if you and your son are being referred to London hypermobility centre, private clinic,or have you found a similar nhs clinic ? Also can I ask where Dr Bruce cardiologist is based.Thank you..I hope you and your son are doing ok. I wish you well and able to enjoy this holiday period x

[chrissie-portland in reply to Tillyray]

Good Morning Tillyray. No we haven't been referred, however, upon recent advice from EDS Support UK I have written to Dr Bruce to request that she refers me to the EDS Specialist Centre in London. I have instructed my son to write to Dr Jenkinson with the same request. Dr Bruce is based at Bournemouth. All the regional PoTS Specialists are listed on the PoTS UK site. Once you prove that you are having heart rate increases of +30bpm, then referral is made by a GP. I am now on Day 54 of Ivabradine for PoTS: the relief is enormous and my overall improvement in ability to function is incredulous!

[chrissie-portland in reply to chrissie-portland]

Sorry techno problem. So I end 2016 in a much better place than the past few years. Hoorah! Have you ventured onto Ehlers Danlos Syndrome and The Cusack Protocol FB? It was there that I gained ALL my understanding of EDS. I do hope that your family spoil you this Festive Season, and you get the rest you so richly deserve. Cheers to our improved health for 2017. God Bless

[Tillyray in reply to chrissie-portland]

That is great news chrissie!.. I now have a good BP and heart rate home monitor and I am keeping a record..I have told my GP who I want my son and I to be referred to in London, and we have an appointment with her after christmas to arrange the referrals.

Best of luck and continued better health x

[hiitsme]

Hi I was diagnosed originally with Hypermobility by my local rheumatologist after pushing my GP I was then lucky enough to get a referral to dr Cohen at Stanmore. In her letter said Ehlers-Danlos type3 Hypermobility syndrome.

[Tillyray]

Hi Annemac.I am pleased to hear you got a diagnosis, I know what a relief that is and it answers so much about what's been going on all that time, and hopefully you can now get any help you may need..

I know how difficult it is to get it acknowledged and to get a correct diagnosis of 'hypermobility EDS'..I am newly diagnosed with it (I have other conditions with similar symptoms) but I too suspected it and so I wasn't surprised..The rheumatologist called it hypermobility.I said to her that I had looked into it, and asked was it hypermobility EDS, she was hesitant in putting the two together but did say it was..I found that confusing, and at first I thought it was two separate conditions.

It isn't made very clear and that doesn't help a patient,because all we want are answers so we can learn what we have to deal with.

Best wishes and good health x

[AlexaPayne]

Since being a young teen i've had unstable painful joints, I have been constantly tired and have IBS. I recently, as in last week got diagnosed with joint hypermobilty syndrome (jhs) I've thought for the last year I've had EDS hypermobility type, but looking online they seem to be pretty much the same thing, which is a little confusing. It is nice to have a diagnosis that explains all the symptoms, but I would of preferred and EDS diagnosis because of my IBS, it seems weird that a joint syndrome can cause gut problems. According to my doctor though there is a difference between being hypermobile and having JHS, many people are hypermobile but have no other symptoms and it causes them no pain. It's a shame us humans can't fit into neat little boxes.