I posted here a while back because I had suspected EDS (probably Type 3), as I slipped a disc at 15 from stopping suddenly at the bottom of the stairs, my ligaments in my ankle are very loose and I have a lot of the other symptoms and commodities.
I also have Vocal Cord Dysfunction Disorder (suspected) and the Respiratory consultants said they see a lot of patients with EDS and conditions in the same bracket with this problem and if you have asthma underneath it can make the problem alot worse.
I got referred to the hospital and got diagnosed Benign Joint Hyper mobility syndrome. Which I have read is either an outdated term and its now Hypermobility Spectrum Disorder or the same as EDS type 3.
And what was worse the consultant was very dismissive of my pain and said because I don't have marfanoid features and flat feet I can't have EDS. Which I have read is also not a thing.
I went to see a cardiologist who thinks its almost certain I have PoTs and they are just in the process of ruling out other issues and I have the symptoms of Mast Cell Activation Disorder so I do have some of the other associated conditions.
It really upset me as she was so dismissive of me and my mother (as she and my Granddad had the same symptoms but can't bend up like a pretzel as she is older now and my Granddad died a while ago) and just essentially told us to deal with it. My mother has really bad arthritis and was wearing her joints away when she was in her twenties and now she is in her fifties she walks around like an 80 year old lady and I really don't want to end up like her if I can avoid it.
I really would like a second opinion about this particularly in light of new symptoms and incidents as everyone is super dismissive of it. I went to A&E as I sublaxed my wrist doing a party trick (I know I shouldn't have) and my ligaments went funny and the triage nurse said oh you have a touch of hyper mobility in the joints?
It is frustrating as a touch of hyper-mobility I could cope with not the sublaxations and I just want people to take it seriously. I ended up in a splint for 3 weeks.
Now the private clinics have stopped self referral I don't know where to turn to, to get a second opinion.
My question is what do you think I should do? Has anyone else been ignored by their GP and local hospital once and what did they do about it?
I really feel I have a better case now as I know more, my cardiologist agrees with the PoTs theory and I need to get referred immunologist about the Mast Cell symptoms (not only because its important but most days I want to rip my skin off because it itches so bad) Further more I'm not a pushover anymore.
Thanks for anyone who reads this, any advice is much appreciated as I'm getting fed up of being ignored and I'm sorry this is really long.