Ouch ! catch up

[SarahLou2]

Hi all , firstly thanks to all who responded to my original post …. V supportive .

I have seen specialist , who gave me a letter that I had not received from last November from rheumatology .

This states that I have symptoms of Ehlers danlos syndrome and connective tissue disorder. …. Which in turn could be the reason for the lesions ie vascular …… well a lot to take in as I did not know any of this !!!

Referral back to rheumatology and all sorts of bloods to be done next week …..!

Wow

[CecilyParsley]

Hi SarahLou it is a lot to take in but at least now you are on the road to diagnosis and treatment. Good luck and please let us know how you get on xxx

[SarahLou2 in reply to CecilyParsley]

Thank you I will ! X

[Chris21]

Hi Sarah Lou 2 Glad you got an explanation. Think that’s why I bruise easy. Are your joints bendy too? As I’ve got older my joints have stiffened slightly. Hopefully the blood test will give a better picture of what’s going on. 🙂

[SarahLou2 in reply to Chris21]

I have always known I had hyper mobility ( ex dancer !) and my son has a really quite extreme hyper mobility .Did not know it could be this disabling though ….. weird isn’t it !

Thanks for all support …. You have all been fab ! X

[Chris21]

I only discovered it was in the family when my grand daughter was 3 (now 19) and got diagnosed with bronchomalasia. Her joints often ‘slip’ out it’s amazing how we all walk around not realising what goes on in our bodies. Now we’re all starting to go on the auto immune side of life but in different ways.

[SarahLou2 in reply to Chris21]

Most of my ‘ problem ‘ with any diagnosis is because I am adopted …. So no history .It’s only because my son has this that they looked at me !!!!

Brilliant what you pass on isn’t it ! X

Hope you are all ok and managing everything x

[Chris21]

We all manage our symptoms ok. Sometimes it’s nice to be able to talk about our aches and pains and know that they understand what your going through and can suggest something that will help. A bit like our own forum 😂 you may find you’ll start to do the same with your son. Hope your hand is starting to get better. X