hayley Posted January 22, 2005 Report Share Posted January 22, 2005 hey everyone. ive just been told i have EDs type 3. If i have children will they have it to because i dont want them to go through all the joint pain that i have.thankshayleyx Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 22, 2005 Report Share Posted January 22, 2005 Hayley, you should see a geneticist or genetics counselor for the answer to that question. It is believed that EDS is an autosomal dominant feature. With autosomal dominant genes, if you're the only carrier (your parnter not), then typically, it's a 50/50 shot.See the EDS website for more information on heritability.http://ednf.org/Nina Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 22, 2005 Report Share Posted January 22, 2005 The other link was to the main entrance of the site, this link is directly to "heritability"http://ednf.org/inheritance.html Quote Link to comment Share on other sites More sharing options...
briarrose Posted January 23, 2005 Report Share Posted January 23, 2005 HayleyI can totally relate, have you tried Neurontin or do you have something else that works for the pain? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 23, 2005 Report Share Posted January 23, 2005 briar, I have EDS III and my pain management doctor wants me to start oxycontin for the pain, on a 10 mg 2x a day dose, permenantly. Unfortunately, my pharmacy will not fill the script--I'm going to have to take it to the hospital where the doctor works in order to get it filled.Nina Quote Link to comment Share on other sites More sharing options...
Jaime Posted January 23, 2005 Report Share Posted January 23, 2005 I have EDS also, but I am having a lot of problems with pain control. My pelvic bone keeps dislocating. I take Ultram, but that is not working. Nina, do you go to a pain clinic? If so, what do they do there? I am seeing a new rheuamatologist who is familiar with POTS and ehlers danlos, but my biggest problem is that I can't take any narcotics because it drops my BP so low and I get severe tachycardia. Any suggestions? Dr. Grubb told me that it was a 20% chance of my offspring having it (I think that was the percentage, but don't quote me on it). I am in the same boat as you Hayley... I want to have children very badly, but is it unethical to put my wants in front of a child's health?? I have been thinking about that a lot lately, but I am going to see a geneticist in March so I will post on what he/she says! Sorry for the somewhat philosophical questions!! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 23, 2005 Report Share Posted January 23, 2005 Jaime, yes, I go to a pain management clinic. My doc calls me his "bad penny" because I keep turning up when he thinks he's seen the last of me He was bummed about my failed surgery. Pain management docs are typically a subspeciality of anesthesiology. His job is to help address my daily pain, as well as acute problems, such as my spinal pain. He's done spinal epidurals for me--inserting a needle into the disc with lidocaine and steriods, to help stop swelling and pain. I've had 3 of them in the past in 2000 through 2001. I will have another epidural (one shot iin each of the 3 discs) in each of the herniations--and can repeat that every few months up to 3x per year.Nina Quote Link to comment Share on other sites More sharing options...
hayley Posted January 23, 2005 Author Report Share Posted January 23, 2005 thankyou everyone for your replys.i havent been prescribed anything for the pain yet.ive got to see a pysiotherapist sometime not sure how as im still fainting everyday.i cant live like this anymore. im usually positive. im just having a bad day.im still waiting for the results from my tests in london.its been nearly two months.anyway thankyou again take care.hayley Quote Link to comment Share on other sites More sharing options...
violahen Posted January 23, 2005 Report Share Posted January 23, 2005 Hi Everyone:I have POTS and EDS....born with both and they are both difficult. That's the bad news. The good news is that I have two very healthy boys (3 and 6) and neither of them got any of my laundry list of of medical problems. Motherhood is the most wonderful thing in life that I can imagine. For me it was worth the risk. I was worried about passing a difficult life on to them, but I also realized that there are NEVER guarantees with anything but that shouldn't keep you from living.Good luck!Kristen Quote Link to comment Share on other sites More sharing options...
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