jclair Posted October 17, 2006 Report Share Posted October 17, 2006 Hello everyone.. I am writing, finally, after I have had my first appointment with Dr Grubb. Let me first say I had been diagnosed from the Cleveland clinic with Pots.. and autonomic dysfunction disorder by my local dr's here.. My appointment was Sept 7th after nearly a year of waiting to get in to see him. We arrived the night before and stayed at the hotel on the campus, which was $59 per night.. And it was great~.. By the way..We went to the spaghetti warehouse to eat..i recommend it..LOL.. Anyhow..We arrived at 10:00, my appointment was at 10:30.. And we were taken back to the room around 12:30, which we were prepared for the wait.. I slept the entire time.. My sister took me, and took notes, which was great.. Dr Grubb then stayed in the room, for 3 hours..total.. Showing slideshow presentations on this illness I have now been diagnosed with. And its called... *drum roll please*.. Ehler-Danlos syndrome.. The vascular type, type IV.. After well over 5 years, I finally have a diagnosis.. And Ehler -Danlos is in some way related to POTS.. But this dr is incredible..Amazing.. Why? Because He takes the time.. Because He is highly intelligent, and it shows..Because He is empathetic.. Because He knows what it is like to have something basically hopeless given to you.. And not only did He give medical advice, such as physical therapy to help strengthen my legs to keep me from a wheelchair longer, and certain medications..But He also gave personal advice..such as seeking a counselor to talk to.. The appointment, the wait was so well worth it.. Now if you read up on Ehler-Danlos, at www.ednf.org you will see that the prognosis is not good for someone with the vascular type.. But.. just knowing, just seeing a dr who knows..who truly knows what I have is very real.. And understanding it is worth all the years of not knowing combined. I also mentioned to Dr Grubb about his many fans here at this site.. He has done wonders in the medical field.. He is an awesome man!!! When I got home, He sent me and my family dr a book, called When bad things happen to good people.. Buy it..get it..Its worth the reading.. God bless you all.. I am most often too weak to get online and write, but I finally had the strength today to do so. Hugs..Jan Quote Link to comment Share on other sites More sharing options...
mom4cem Posted October 17, 2006 Report Share Posted October 17, 2006 Glad to hear you had a good trip. As no one wants to be ill, it sure can be relief when one is ill to finally have a name for it and have someone who understands to help us understand.Maybe someday I will get to see him. I'm laying low in the background since I have been for the most part functional. Really wish there were others training under him and they would then spread out over the country so everyone would have access to this great knowledge he has!Hope you are feeling well soon. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 17, 2006 Report Share Posted October 17, 2006 glad that your appointment was such a positive experience for you in the midst of a rough situation. dr. grubb has been my doctor for almost ten years now so i know firsthand the positive elements you're referring to in your time with him. and i grew up in toledo so have had many a good meal at the spaghetti warehouse melissa Quote Link to comment Share on other sites More sharing options...
jenwclark Posted October 17, 2006 Report Share Posted October 17, 2006 I'm so glad to hear about your appointment. Dr. Grubb sounds wonderful, exactly what I was hoping for. I'm seeing him in January (after an 8 month wait), and I'm glad to hear he's worth the wait. I'm sorry to hear your prognosis isn't so good, but I understand what you mean about the relief of just knowing. Good luck, and take care of yourself.spike Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 17, 2006 Report Share Posted October 17, 2006 I'm so glad your appointment went well-----that Dr. Grubb was able to help you understand some of this through his detailed explanation! Dr. Grubb is a physician full of good things--one of them is that he believes us.Regarding the EDS----have you seen an EDS specialist before seeing Dr. Grubb? I just saw one a couple weeks ago who confirmed my EDS---I also have vascular involvement---but not type IV. I have what was formerly knows as type III---now known has joint/ligament hypermobile type with vascular and skin involvement/skin fragility/poor wound healing. I saw two physicians---a geneticist, a cardiologist, and two genetic counsellors. I also had a cardiac echo that was more detailed then the ones I have had in the past. In the past I didn't take all this blood pooling stuff all that seriously, and I didn't think I had it---so I never really paid attention. I always thought my spine had something to do with it---well it does, but so does the EDS, and I have definate blood pooling. It helps to see an EDS specialist also. I found the one that I saw to be very validating---and took all of my conditions very seriously. I also have problems with my cervical spine, chiari malformation, cervical/cranial instability---and so on. EDS probably does play a role in the decline in my spine....Dr. Grubb knows quite a bit about EDS.Maxine :0) Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted October 17, 2006 Report Share Posted October 17, 2006 Thanks for sharing. Quote Link to comment Share on other sites More sharing options...
jclair Posted October 18, 2006 Author Report Share Posted October 18, 2006 i haven't seen an EDS dr as of yet..didn't know there was such a thing..lol.. Quote Link to comment Share on other sites More sharing options...
bren62 Posted October 18, 2006 Report Share Posted October 18, 2006 I'm glad you had good experience at your appt. I've been tempted to take my daughter to see Dr. Grubb, but haven't made up my mind yet. It's at least a 10 hr trip from here. I hate driving in cities and highways. I'm curious about EDS. How is one diagnosed with this? Are blood tests done for this and if so what types? Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 18, 2006 Report Share Posted October 18, 2006 Here are some links to help explain what EDS is---and how it can affect you. http://www.icongrouponline.com/health/Ehle...yndrome_ph.htmlhttp://www.ednf.org/http://www.emedicine.com/derm/topic696.htmhttp://www.medicinenet.com/ehlers-danlos_s...ome/article.htmAnd here's the site for Cincinnatti Childrens Hospital---this is where I went to get my official diagnosis of EDS.http://www.cincinnatichildrens.org/svc/alp...t=%3C%2FFONT%3EMaxine :0) Quote Link to comment Share on other sites More sharing options...
michiganjan Posted October 19, 2006 Report Share Posted October 19, 2006 IK am curious. Who diagnosed you with the EDS type IV? I saw a geneticist at the University of Michigan and I was tested for type IV EDS with a skin biopsy, which was negative. The diagnosis of the other types of EDS is clinical, but there is an actual test for type IV.Michigan Jan Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 19, 2006 Report Share Posted October 19, 2006 Yes--Michigan Jan is right, this is true---a skin biopsy is done for this type of EDS........I would suggest getting to an EDS expert/geneticist to have the EDS confirmed.I just received a note from my neurosurgeon that Dr. Wenstrup at Cincinnati Childrens Hospital is the past president of the medical advisory board for EDNF, the national association of EDS pts.That is who I saw on Oct. 4th--------I was told by the NSG that his confirmation of my EDS holds great weight in my case.Good luck to you---------- Maxine :0) Quote Link to comment Share on other sites More sharing options...
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