Stace915 Posted January 24, 2007 Report Share Posted January 24, 2007 I just got back from my first appointment with Dr.Grubb. I was hestitant about keeping my appt b/c I do not currently have insurance and it was $350, but I am SOO glad I went. He spent 3 1/2 hours with me, never in my life has a doctor spent more than 30 minutes with me. I was afraid that he would just tell me the same things all the other specialists have, but he was so helpful. I really think that the fact that he is a cancer survivor helps him relate so much more to the patients, he even gave me a hug when I left.He told me that I have hypermobility, which I had never heard of, and was amazed that so many people with that also have dysautonomia, and it was just so crazy to me that he could tell that from bending my fingers and touching my "velvety" skin. And to think all these years when my boyfriends said I had such soft hands I always just said, well yes I am a girl I am supposed to lol.!! Anyways in all my Dys. research over the last 2 years I never heard of hypermobility and was just wondering how common it is amongst everyone on the forum. I am going to search it on google to get a better understanding if anyone has any good info please let me know.Thanksone more thing is it the same as EDS?? Thats what it sounds like from the different past posts I looked at Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 24, 2007 Report Share Posted January 24, 2007 Yep. I was going to recommend that you look into Ehlers-Danlos Syndrome (EDS). Google it. I know that there is an excellent EDS website. That's what he seems to be implying may be the cause of yor POTS. Julie Quote Link to comment Share on other sites More sharing options...
worththewords Posted January 24, 2007 Report Share Posted January 24, 2007 I was just looking for you online to see how your appointment went. Glad to hear your appointment went so well!! My fiance read your post with me, as you know I've been looking forward to seeing Dr. Grubb. I say the same thing about my skin all the time and I've always wondered about EDS. How did he bend your fingers? I can bend mine in ways I've never seen others able to do. Is there anything they do to treat hypermobility? Quote Link to comment Share on other sites More sharing options...
pat57 Posted January 24, 2007 Report Share Posted January 24, 2007 so glad it was a good visit and you are pleased with him. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted January 24, 2007 Report Share Posted January 24, 2007 I am glad you had a great visit and learn more about your EDS. Quote Link to comment Share on other sites More sharing options...
sfrnklin Posted January 24, 2007 Report Share Posted January 24, 2007 Hi Stace,I am so glad you had such a great apptmnt. Everyone in his office is as TERRIFIC as he is. I also see Dr. Grubb and like you I also have hypermobility. My sister and my daughter also have hypermobility, but no dysautonomia for them and hopefully never cause we both know how horrible it is.Don't be surprised if you don't get a book in the mail from Dr. Grubb in a few days. He sent me one called "When Bad Things Happen To Good People". If he does, I highly recommend reading it. He has been sending it lately to new patients.Maybe I'll see you in his office sometime. Good luck with your plan of care with him. He is TERRIFIC!!!!!!Susan Quote Link to comment Share on other sites More sharing options...
corina Posted January 24, 2007 Report Share Posted January 24, 2007 hi stace,i am glad that you had such a great appointment! i wish i would be able to see dr grubb. but then, when i would be in the us i would be too busy trying to arrrange meetings with all you guys here at PPforum!!! corina Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 24, 2007 Report Share Posted January 24, 2007 Yes, hypermobility with the velvety skin goes along with the hypermobile form of eds, aka HEDS, or EDS III in older terms. You can read up on EDS on the EDNF website at http://www.ednf.organd if you go to the main DINET page, under "mechanisms", Michelle has kindly put all sorts of info there for all of us to learn from. There are crosslinks to research and info within that section.Nina Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 24, 2007 Report Share Posted January 24, 2007 I'm glad you appointment went well, and hopefully you can get a relief in your symptoms.You may consider seeing and EDS specialist to confirm your EDS diagnosis. My NSG in Ny thought I had it, and so did the physical medicine doctor at the Cleveland Clinic. I still wondered if I had true EDS.I decided to go to Cincinnati Childrens Hospital and see an EDS specialist/geneticist, and he said I have EDS TYPE III hypermobile type with vascular and skin involvement. I also saw a cardiologist there as well who did a detailed ECHO to rule out involvement of the Aorta. My aorta was fine, and he said if I don't have problems with this at age 47 then I probably won't.The EDS doc also thought my spine was affected a great deal from my EDS----unusually hyper mobile, and unfortunately this has been a problem as you can see by my signature line. I have to be extremely careful with my body mechanics.It was difficult to tell by my skin because I have chronic dry skin, but the unexposed areas were not dry and you could clearly see the "soft velvety skin', and the cigarette paper looking scars---poor wound healing ect.I have blood pooling in my arms, legs, and abdomin from the vascular involvement. It is obvious in the joints, and did not need much investigation there......... It is important to get a expert in EDS to see what treatments are available to help with your EDS symptoms.I wish you the best, take care.Maxine :0) Quote Link to comment Share on other sites More sharing options...
cardiactec Posted January 24, 2007 Report Share Posted January 24, 2007 do any of you with EDS/HYPERMOBILE have MVP? i heard that in some form of EDS MVP is found....? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 25, 2007 Report Share Posted January 25, 2007 Nope, I have no mvp, and only trace regurge from my tricuspid valve. There are at least 6 major types EDS--within the major top 3, HEDS, Classical and Vascular, Mitral Valve Prolapse is not listed among the major or minor diagnositc criteria. However, it can be an associated symptom with any of the EDS types.Nina Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 25, 2007 Report Share Posted January 25, 2007 Some doctors who specialize in EDS will do an ECHO to check for MVP or other valve issues, and they will also check the aorta to see if that is affected by the EDS.I was diagnosed with MVP in 1982, and again in 1990, but I was later told I don't have this. My last ECHO showed trivial leakage in three valves, and I was told this is nothing.Maxine :0) Quote Link to comment Share on other sites More sharing options...
mom4cem Posted January 26, 2007 Report Share Posted January 26, 2007 Hi Stace,Glad to hear it went so well. It really gives us all hope the more positive dr. experiences we hear. Quote Link to comment Share on other sites More sharing options...
Eli6596 Posted January 27, 2007 Report Share Posted January 27, 2007 My jaw just dropped open. I can move my fingers together to mimic a snake's slithering movements. I show other people to get laughs, but they can never do it. I wonder if I have something that I never suspected. It is amazing that we don't realize that some tiny things can be abnormal. As a young adult I used to think that everyone must get dizzy if they stood too long. I thought it was normal when my symptoms were soooo much milder.Karyn Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 27, 2007 Report Share Posted January 27, 2007 I didn't realize till relatively recently that being (too) flexible could be a bad thing. Everyone always pronounced the importance of STRETCHING, the more the better. And sometimes it is hard to know what "normal" is. I had no idea that everyone's elbows didn't bend backwards, till they started hurnting and pooping, and my doc told me that I had too much mobility. I now ask my various pt people to tell me what normal range of motion is in a given joint, so I know to try not to exceed it...easier said than done, of course.It's a good thing I was not graceful or coordinated enough to do ballet or gymnastics as a kid or I could have stretched stuff out even further. Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 29, 2007 Report Share Posted January 29, 2007 I wish I would have never snaked myself around my car seat to get a sippy cut from my grand daughter.I should have known better-----the EDS specialist told me my spine is hyper mobile.So hear I am with more pain then I had before. That's what I get for not thinking............Maxine :0) Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 29, 2007 Report Share Posted January 29, 2007 Ouch! Why don't we ever remember that are quick actions have long lingering consequences? (glad you had a good appointment)feel better soon, tearose Quote Link to comment Share on other sites More sharing options...
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