Symptoms getting worse

[Tharris85]

I was diagnosed about a month ago and I just continue to get worse. The pressure in my head is unbearable with migraines daily and at leaste twice a week I become very week and get the feeling of being almost numb and very disoriented and my head is very heavy and if I try to move I become dizzy. I have also been having trouble swallowing and my memory is horrible for a 26 yr old. I have been seeing a neurologist that said my chiari is not the cause of my symptoms because it is only 6mm and is only treating my migraines. I can't continue to go on like this and I am beginning to feel hopeless. I am taking topramax for migraines plus tramadol and Vicodin prescribed for pain but it still hurts. No pain med can take away the squeezing I feel behind my ears! So I guess my question is even though my herniation is only 6mm can that still cause these symptoms and if so can they fix me?!?

[seamatty]

What did you mean about your toes? Do you mean you can lift them off the ground 45 degrees? Is that considered abnormal?

[selmaS]

  The difference is, with EDS it is a connective tissue disorder allowing the joints to move so far....and they can and do move on their own, and sublex which can cause pain.

being hypermobile or just double jointed with out the rest of it, can come from training the muscles and the joints to move where u want, but u r moving them....

  So there is a difference....many times a Dr will say u have the start of arthritis when the swelling and stiffness can be from EDS....

  Again depending on the type one has will depend on  how it affects u.

  Those that have the vascular type do not always have the ability to move their joints  the way those that r hypermobile can...

U really need to be looked at by a Dr that knows EDS is not just about if u have hypermobile joints.

[seamatty]

My doctor told me that nearly 20% of people are hypermobile...but that doesn't mean they have EDS. How do you discern? my doctor said from what he has read there is really no difference between hypermobiity syndrome and eds 3. He said if they are the same then it's as common as seasonal allergies

I think I heal fine. Never had a lot of bruising...

[selmaS]

  Do u have the easy bruising, and slow to heal?

Something they do not include on the beighton scoring is the toes, but I can lift mine up, with no aid from my hands, to a 45 degree angle.....I thought this was normal....so if I got points for that...well...lol...lets say I have a few more joints that move oddly then what they look at....my shoulder dislocated as well as my hip and my ribs,....

what I am getting at, there is much more to it then just these few things they look at.....

[seamatty]

I am only a 2...I can bend my thumbs back to touch my forearm on both hands. But can't do any of the others...pinky, 10 degree arm, knee extension are negative

[selmaS]

  Since this is for hypermobility it can be a 3 or 4  as u do not need to be hypermobile to have EDS.

I had 7 out of 9 and there was no way I would try to bend down to touch the floor....I would get too dizzy and fall....but I do believe if u watch Dr Diana on the links in the EDS group here in MedHelp u will see she says what the score should be....if I recollect this  : )