[Health] The Continuing Adventures of Alphabet Soup

[accioayla]

Ok, in the style of jaylake and calendula_witch I'm going to do a Have Some More Information post. We all have medical problems that someone else out there probably has too. We want more information, and the process of getting it isn't always easy because people don't talk about these sorts of things. So I'm going to once more go unto the breach and start talking about

Comments

[fjm]

Over from jaylake. I have celiac and I particularly recognise the "oh, let us deal with this pain" syndrome. Fifteen years of migraine drugs, and separate treatment for the joints and for the stomach, and the eczema and for the low blood pressure. The celiac turned out to be responsible for all of them. Sadly the joints are screwed, but there you go.

[accioayla]

Hi there and welcome! I'm sorry it took so long for the medical profession to get around to finding the answer (or for you to find the answer yourself...). I think a big problem in the medical field is the narrowness. They treat the symptoms, but don't bother finding out the cause unless the symptoms are about to kill you right then. Ugh.

[cypherindigo]

From Jay Lake's LJ.

I can do that Thumb to the arm thingie, and occasionally when I take a step off a curb or just walking across the room it feels like the bones in my ankle have miss-aligned and I fall. Is this part of what you experience? Just curious.

I am living with Lupus and RA, so I do understand the frustration with doctors.

Thank you for sharing.

[accioayla]

Yep! That ankle thing is part of what lead to the re-constructive surgery. The thing with me though, is that I'd fall and bounce pretty much right back up. No major damage was done, because my ligaments are just that loose, I bend instead of break. I finally went to the ankle doctor when I took a fall that my ankle still hurt two days later...

[accioayla]

Sometimes it's just a problem with that one ligament. And a Brostrom Procedure can take care of it. In my case though, I've gone back to how bad it was before the surgery.

[accioayla]

I'm very saddened to hear you've yet to find something to help your son. I hope that somewhere, someone will see something and go 'Hey, this sounds like your son' as someone did to me. What sort of chest pains?

[accioayla]

It is very scary, considering I would have thought that the re-construction would have stuck. But if I have EDS, it would explain the re-elasticity. The collagen doesn't form correctly, and thus it just sort of... re-stretched.

I would seriously recommend going to see an ankle orthopaedic doctor. Tell them that your ankles are extremely unstable and you are worried about the damage caused to them by falls etcetera. You may need something more than just an ankle brace.

Also, you might want to see if EDS is a factor for your son. The Vascular Type of EDS can be life threatening. Take a look at the information out there on it and see if anything fits...

EDS

[anonymous]

I recommend that you visit EDNF.org, the website of the Ehlers-Danlos National Foundation. There you will find Medical Resource Guides which you can share with your medical professionals. These publications will help to educate those doctors as to your condition and how to treat and manage your care. EDNF just completed a new publication which is being given to its membership and will then go on sale on February 1st. It provides a checklist for determining diagnosis in children and care in adults. It is an exceptional piece for everyone with EDS to have and to share with their doctor.
Good luck on this journey which many of us must follow. Our care will improve as we help educate those who care for us.