Undiagnosed and rare conditions
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Hyper mobile Ehlers Danlos Syndrome

Lucas83Lucas83 Member Posts: 14 Connected
is there anyone here who has been diagnosed recently, particularly interested in those who have been diagnosed since the change in criteria a few months ago. I have HSD but it’s more than that, I have awful fatigue, I am in constant pain, I have bowel issues, I feel anxious all the time. Just over a year ago I went suddenly deaf in one ear with no explanation, they can’t find any reason for it, it’s almost completely gone but I do wear a hearing aid. I have just been diagnosed with neurocardiogenic syncope which means I can collapse with little warning because when my blood pressure drops my veins expand to cope with the volume instead of pushing the blood back up in to my head. I will be on medication for that for as long as it agrees with me. I see a rheumatologist on Thursday, I’m seeking an hEDS diagnosis. But I’m nervous, it’s a hard diagnosis to get and it’s relatively unknown, has anyone got any words of wisdom?


  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @Lucas83, I'm sorry to hear about the symptoms you're experiencing at the moment- they sound really debilitating.

    You might like to chat to @chronicendeavors, @katemose and @flippy, who have EDS and might be able to advise you further on this!
  • gonegone Member Posts: 3 Listener
    edited December 2017
    Sorry to hear that you're struggling so much. I have a diagnosis of hEDS (well, I had a diagnosis of EDS-HT back with the old nosology, but retained my diagnosis in the switch over, though they still refer to it mostly as EDS without the subtype in most of my documentation, potentially due to the fact I have some vascular issues - these still need to be explored, hopefully I don't have vEDS!).

    If you have any questions I will try my best to assist. 
  • Weebles1703Weebles1703 Member Posts: 13 Courageous
    I have Heds. I also experienced sudden deafness in 1 ear. It was diagnosed as eds induced  otosclerosis. I had my surgery (stapes removed and replaced with titanium prosthetic bone) but I wouldn't recommend that surgery. I got awful tinnitus from it and the surgery caused neurological hearing loss on top of the conductive loss. 
  • Lucas83Lucas83 Member Posts: 14 Connected
    Weebles that’s awful! I have terrible tinnitus as well on top of the deafness, sometimes it’s so loud it drowns everything out! Since positing this, I have been diagnosed hEDS, Fibromyalgia, Neurocardiogenic Syncope, Chronic Fatigue Syndrome and Raynauds Syndrome and of course I’m partially deaf. Currently waiting on results for stomach issues too, it’s never ending. So tired and sore all the time, last week GP told me I have moderate to severe depression and anxiety as well. I’m just about to apply for PIP but the thought of going through it is really worrying. Citizens Advice are going to help me through it.
  • Weebles1703Weebles1703 Member Posts: 13 Courageous
    Good luck with pip, Lucas83.  I switched from dla last year and had to have a face to face with an atos/capita person but it was OK. I was lucky to get someone who understood eds  and I had sent loads of medical evidence with my form. I have lots of gastro involvement so feel free to ask me if you have any queries. The cab are brilliant. I'm doing good their training in April to hopefully volunteer for them. 
  • Blossom223Blossom223 Member Posts: 7 Listener
    we have a lot of the same conditions/symptoms! I know how hard it is to go through this, and I wish you luck with a diagnosis. In my personal experience only a geneticist can diagnose EDS officially. My rheumatologist explained to me that they treat inflammatory and autoimmune connective tissue diseases. EDS is a genetic connective tissue disease. This may be only my personal experience but just a warning that you may not be able to reach a diagnosis through your rheumatologist. I understand your feelings and I am very anxious that when I finally get assessed I will not meet the very hard criteria. I wish you all the luck in the world. Also, as for it being an unknown condition, the actress (and character) who plays Izzy on Coronation Street has HEDS. This for myself is a good way to quickly and easily get people to understand what the condition is. Sorry I’m so late to this thread but I hope I can still be a small help. 
  • Lucas83Lucas83 Member Posts: 14 Connected
    Hiya! I did manage to get my diagnosis Blossom. There are no genetic tests for hEDS. It has to be diagnosed by the rheumatologist. That’s funny I often refer people to Izzy from Coronation Street but it seems no one I know watches it lol!
    my rheumatologist has now referred me to Occupational therapy and a pain clinic. I have been attending physio for 2 years now and will continue with that as well. I spent over a year keeping diaries of injuries and pain and dislocations, and took that diary to the rheumatologist, I think that really helped in pushing my diagnosis along. 
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