Tina (serenity151979) wrote,

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OK, I'm not actually here to talk about the pudding incident, but for those of you who know what that means... *wiggle jiggle*

Instead, here's the health update that I promised you a few days ago.

As some of you know, I was diagnosed with joint hypermobility syndrome by a local rheumatologist back in November. However I didn't think that this was the full story and explain all of my symptoms, only some of them. So I went privately over to London at the start of January to see Professor Grahame who is a specialist in hypermobility disorders. I had 90 minutes (instead of the usual appointment time of 60 minutes, so at least I got my moneys worth!!) of questions and testing and more questions. He gave me a brief rundown of things while I was there, but I received his full report a couple of days ago and he has diagnosed me with Ehlers Danlos Syndrome Hypermobility type with Marfanoid features (Marfanoid Habitus) and also the underlying joint hypermobility syndrome. He also diagnosed me with autonomic dysfunction, which is basically a malfunction of the autonomic nervous system, and he said my results were also indicative of postural orthostatic tachycardia syndrome.

So I'm currently on a waiting list to see a cardiologist as the EDS can cause some heart problems, and also still on waiting lists for a pain clinic, physio and podiatrist, and I'm also hoping to get on the waiting list for neurology to see about the autonomic dysfunction and the postural orthostatic tachycardia syndrome, but Professor G wants me to actually see the specialist in London for that, but it depends on NHS funding. He also wants me back to London to see a specialist in neurogastroenterology, but again that depends on funding. I'm also trying to get funding to go to Bath pain management centre in England, but that's going to be a tough call as well. Everyone keep their fingers crossed for me!

I have an appointment with the occupational therapist on 2nd February, so hopefully that will go well.

I have to admit that I kind of feel all over the place at the minute. It's great to finally have a definitive diagnosis and to know that I'm not crazy and all this stuff is real and really happening to me, but it's also kind of 'gaaaaaah!' to hear and accept that I have this condition that has all these problems that come along with it. But I'm very thankful that it's the hypermobility type of EDS, as there are also other types and some of them are much more deadly, especially the vascular type. So if I have to have it, it's the best one to have. =)

Oh, and I managed to dislocate my toe when turning over in bed the other night. That was fun. Put it back in myself though, lol.

Tags: eds
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