Re: Beth

[Guest guest]

I react to Novocain about the same way. It take ALLOT and I never get fully numb.

Makes Ya hate the dentist!. I'll give you all the research study info when you contact me. c-clark05@... I'll copy paste the info. You don't have to have a DX to get in, They will interview you on the phone and get an idea if you have a connective tissue disorder. They are booking into June now. If you go, you will get your DX from them. Ginny, I'll need you home address too .

My son's arm pit is in the CD, Not exactly Star material but hey, what the heck <G>

They used his picture for the stretch marks.

Hugs

Cindy

Re: I'm New Here

Cindy,The dentist shots work eventually but I always need extra shots to get numb. Same for a recent procedure to open up the pec minor incision which was infected, clean it and close it with traditional sutures so it would heal, the Dr did it with Novacaine and was surprised he had to give an extra injection as I still had feeling in the area. As a kid I learned to "tough out" those horrid dental appts and I think that is why I have a fairly high pain tolerance. One thing that bugs me no end with my nerve problems, all the Drs and therapists say "well you have great ROM", well, you would too if you were as hypermobile as me, duh! Thing is, it hurts like heck!!The geneticist did send me for an echocardiogram which came back OK, and he faxed my findings to the lab in Seattle?, Washington, anyway, that does the testing, and they said they didn't think the testing wd be helpful for me, don't know why or why not.I tried to ask Dr Schwartzman abt this, as he is such a top Dr in his field I thought he might have contacts with top Drs in Rheumatology dealing with EDS - he brushed it off and said I don't have it, without looking at my records. Guess it's the same as anywhere, if it's not the Dr's specialty, they aren't interested! He is tops for RSD so no complaints abt that, but do want to get the connective tissue stuff sorted out sooner than 3-4 years! Do you have info on the study, or is there info on-line I can look at?I will send my addy off the board, thanks!beth> > Thank you all for the warm welcome. I see this board is as > busy as my EDS board. I wil have a hard time keeping up with all the > emails. <G> Your answers can in just in time for me to talk to the > primary this morning. He isn't convinced that Dyaln has RSD, but > will look into it further. The Doc does have several reports from > other specialists that have stated they feel he may have it. The > primary wants us to see an edrocronologist and another ortho Dr > before he goes futher looking into the RSD. He said he would send us > to a nuerologist for that, is that the right type of Dr for RSD? > Today the Dr raised his meds again. He'll now take 230 mg MsContin 3 > times a day totaling 690 mg. and moved up the Actiq to 800 mcg. > Absolutly nothing so far has gotten Dylan under an 8 in pain. > Hopefully this will help. > > Getting my son help has been very hard. No one wants to put a > teenager on narctotics, and no one wants to see him suffer like > this. EDS can be a very painful disorder, but his pain is not normal > with EDS. I took him to the National Institute of Health in land > finally, after getting no help at home. They found many things wrong > that no other Doctors had found. They sent us to the Cleveland > Clinic in Ohio and to the Chiari Institute in New York. We live in a > town outside of Detroit Mi. So as you can see, this has ment allot > of traveling for us. So far his diagnosises are, Ehlers Danlos type > 3 or 2, > > Chairi 1 malformation, Autonomic Dysfuntion, Fibromyalshia, > Rickets (spending three years in bed and no sun light, > Bradycardia/tachacardia, Scheuermanns Disease, and Osteopenia. And > to think, three years ago, he was healthy, happy, and had a future. > I just don't know why this all happened so fast. He is the youngest > of 5 boys, and they are all fine. Oh my I see this is getting long. > > So to answer some of your questions :> > Ginny- Yes he has tried Neurontin and topomax but they didn't > help. He never fell (Before the pain) or dislocated the R knee, but > that knee cap goes off track easily. He had been in track in High > School, so perhaps the constant pounding of the joint could have > contributed to the problem. His jaws, hips, shoulders and elbows > dislocate and sublex, but so far not his knees. I may like to talk > to you further about the nerve stimulater if that is OK. > > - Yep, we tried Methadone. He got up to 60 mg but it made > him very ill. Side affects were just too much to handle. The > Fentenal Patches worked the best for pain, but again, the side > affects for him where more than he could take. > > Barbara- He has tried braces on his knee, physical therapy, > massage therapy, energy work, warm water exersize, Accupressure, and > of course the all famous head shrink. Nothing helped. Narcotics keep > him at a level 8 out of 10. He has hit 10 many times. > > > > So many of you have had very good anwsers for me. I understand > that just like EDS no two people are going to be the same or find > the same treatments that work. I have to find better relief, quality > of life for him. We would be happy with that 5 or 6 level. I want to > see him continue school, he had big dreams. I told the Dr today, I > want to start looking at other methods of pain control, like blocks, > stimulators, morphine pump, things like that. These levels are > narcotics are getting way too high. I worry where we go from here. > > Thank you all so much. Everyone of you that answered, helped > me. :~)> > Cindy> > > > > >