So let me tell you where we are in the process of the nhs deciding if my little man and I have Ehlers Danlos Syndrome
In March I saw the consultant rheumatologist who stated he was unable to diagnose me as that was the role of the geneticist, but he said I scored a five on the beighton test which is a test of flexibility and a five or over puts you in the EDS camp. He referred me.
Last month my little man saw his consultant paediatrician who originally came up with the EDS diagnosis last April. He again said little man is far too stetchy and states he thinks it's EDS. Another referral made.
Quite surprisingly the EDS clinic have married up these two referrals and we have a joint appointment next Wednesday. I'm now anxious about it.
Little man has twice been told he has EDS. A haematologist also suggested it was a collagen issue causing his capillaries to leak. My pain and exhaustion issues have gradually been getting worse over the last couple of years and my sister has similar and other issues. Having done my own research, listening to other consultants and discussing things with diagnosed EDS sufferers I am certain this is the issue but I'm worried we will be brushed off as we have been in the past simply because our bendyness abilities aren't in the extreme.
On Wednesday I will be unhappy if its diagnosed and unhappy if they don't. Wednesday is pretty much going to be a crappy day.
I can't pretend for a minute to understand what you're going through, but sending hugs your way for Wednesday.
ReplyDeleteThank you Sarah. I doubt I will be able to update the blog on the outcome for a few days following the appointment, but I will do so at some point. Thank you for your support.
ReplyDeleteI hope all goes well and you get your diagnosis. I know this sounds horrible, but as a nurse I feel it is better for a patient to have a diagnosis rather than being in limbo.
ReplyDeleteI wish you and little man all the best. X
Ok, can see why you're so exhausted now! :( Will be thinking of you on Wednesday x
ReplyDeleteI'm crossing my fingers for a great geneticist for you. Also, remember, these people know that there are a range of issues that come with EDS - just because you're not wheelchair bound doesn't mean they won't see your symptoms and take you seriously.
ReplyDeletexxx Good luck. I know where your headspace is at right now.
We shoud meet. It took me years for a diagnosis and when I got it, I was surprised at EDS. Lots of things had entered my head but EDS wasn't one of them. But it took a very long time to get there.
ReplyDeleteFor me, there is one man who has the key and can tell you definitively. He is the only one I trust re EDS. I got to him with everything and so the consultants I see now. If you need a final answer, he is the man.
I hope you get some answers, truly, but I'm not sure geneticists are the right people as they often only diagnose the most severe people with EDS and disregard the rest. Not necessarily their fault - it's rare, little experience of it, and only the most severe are used to train these so called experts.
If they say no to EDS, it might be something else but if you feel not, then please, see this guy.
Ahh - that was my daughter's account - should have been mine, sorry.
ReplyDeleteOh, I'm so sorry. I hope you've both come through all of this fine and that the news is the best possible news it can be.
ReplyDeleteWell Rebecca, even though Wednesday will be bad, I really hope things will turn around for you in the future.
ReplyDeleteDuncan In Kuantan
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ReplyDeleteI feel so sorry. I wish everything will be ok and be all the good angels with you.
ReplyDeleteI feel so sorry. I wish everything will be ok and be all the good angels with you.
ReplyDeleteMy thoughts and prayers are with you during this difficult time.
ReplyDeleteGlynis - Thank you. I would rather know, that way I can then deal with what it is.
ReplyDeleteClaire - Thank you Claire, your support has been appreciated.
Veronica - Thank you Veronica. I know you understand. I will try and prepare and write down the questions I have and also the items I believe are relevant.
Effie - To be honest I'm not hopeful which is why I'm stressing so much about it. If we are not taken seriously tomorrow I will then pay out and see the man in London. It's a lot of money (especially with my husband having recently lost his job) but we need to know. I am going to write down all the things I think are relevant and the questions I need answering, and I will hopefully not leave without knowing they listened to me. We should definitely meet x
Lindsay - Thank you.
Thanks Duncan. I will hopefully update the blog at some point next week.
Riverston - Thank you for your kind thoughts.
Thank you Milo. They are very much appreciated.
I'm so sorry for all you are going through. Sending good thoughts to you and your little guy, I hope for the best for you both. Take care!
ReplyDeleteThanks Julie. We had our appointment. It was a mixed bag and I will update via the blog in the next few days.
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