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I was diagnosed with EDS at UCSF a few months ago in the genetics dept. (pediatrics) and I’m 46
I woman from work (hello Jenna ) who has EDS asked if anyone ever diagnosed me after hearing my lifetime of medical mishaps etc (lets of birth defects and other crazy stuff)
They doctor diagnosed me and then said go back to your primary you’ll need a life time of PT. She hung me out to dry with a diagnoses that did nothing for me. No information, no testing, no doctors, nada.
Recently the back of my head felt like someone bashed it in with a baseball bat that would come in waves as well as pressure in my head and ears. (better for 3 days ;-)now and I’m not dizzy or feeling like I’m in a video game now and my balance is better) That went on for nearly 3 weeks. During this My eyes started hurting. First it was painful to lightly touch and the vision between the two eyes changes randomly. RIght now my right eye is getting worse and feels like it I was punched in the eye (very painful). Three weeks ago I insisted my doc at the local clinic give me a referral to get my eye looked at and the soonest appt is at the end of March. I found “Eye Care Institute” in Santa Rosa that will see me asap but they need a referral which I’m going to try to get today.
What tests should I have them do special for EDS… The don’t do eye exams they do medical exams of the eye which is what I think I need but they said the tests need to be on the referral. They have never heard of EDS
So…. if anyone could guide me as to what tests I should be having them do for my eyes and …. what is the deal with these sucky headaches in the back of the head and prickly skin that hurts to touch that doesn’t just go away but lingers for days?
I haven’t been tested for anything and have a lifetime of MRIs that just so bulges and what not that don’t explain all the pain I’ve gone thru in my life internal organs or muscular skeleton … I’ve been telling them for years to do a standing or sitting MRI but no one listens…. NO I know I have EDS which is just a name for you still have random critical issues no-one is willing to treat so… I do the best I can to ignore the pain (where ever it is that day or month) and Shine 😉
Any help much appreciated Eyes first since they hurt the most right now.
Blessings and Gratitude
Echo
Hi Echo, You’ll be happy to know that *most* ocular side effects of EDS do not cause the pain you describe. Any good eye doctor will know what to do when you say “my eye hurts”. 😉 It shouldn’t be up to the patient to figure out what tests are needed (can you imagine? We’d all need a medical license…). Likely, something is going on that can be diagnosed and treated, even without any real knowledge of EDS. It’s interesting that you say they don’t know anything about EDS? I know in optometry school, we discussed some of the ocular findings often found in connective tissue disorders (EDS, Marfans, etc). Perhaps they will remember “connective tissue disorders” better than “EDS”? I don’t know. As I mentioned in my book “EDS and Your Eyes”, it is important to NOT assume your ocular symptoms are due to EDS and are therefore unactionable. I betcha’ they’ll see what is happening and will treat you appropriately. Will you let us know how it goes? 😉
The pain got so bad that when I went to the doctor for the referral that the doctor came up front top see me. Flash light in hand and pointed. She sent me to the ER. It’s not a detached retina 😉 The ER doc set me up with an emergency optimoligist appt. He thinks it might bee an infection or fluid. I’m heading there now and will report.
On a side note. I just want to cry today. My bladder/hoo hurts and I just spoke to the genetics dept at ucsf. They’ve done nothing for6 months and there is a 6 month wait.
Another 6 months of nothing. :/Hi Echo, I’m so glad to hear you are getting immediate help. Yea, retinal detachments are painless — your pain hints at inflammation (perhaps an iritis?). The good doctors will be able to check for that easily. I wonder if you get get more immediate help for your bladder pain through a urologist? The ER? Geneticists are usually the ones to see if you need a genetic diagnosis (not so much for treatment of comorbid symptoms). Hang in! 😉
Apparently I have an infection in both eyes. They prescribed antibiotic eye drops with steroids and suggested I get treated for the upper respiratory thing I’ve got going on. I’ve been treating it for three plus years consistently with either antibiotics and/or homeopathically.
My eyes have never hurt this badly though.As far as the bladder pain and other stuff, I’ll tell my story which includes my bladder and hoo ha etc etc, in my next post. The day was very trying and tiring.
Tue I’m taking a vacation from my life so hopefully no medical stuff tomorrow.
Blessings and gratitude.
Echo
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