Appointment With Dr. Grubb

[Maxine]

I feel bad for taking Dr. Grubb's time today, as he has enough on HIS plate without me in there whining. One major question I had was why vitamin D seems to aggravate my POTS so much-----I don't understand it. One thing he said was maybe try getting more sunlight, or even artificial sunlight. I can't take florinef or midodrine becuase I can't have any spikes in BP due to vascular complications with vertebral artery.

I told him I'm having a very difficult time finding a good neurologist to take the spine instability seriously. I may have one at the Cleveland Clinic----only time will tell. The neurologist at the CC added me as a regular patient because of lesions found in my brain. He's more focused on that then the spine instability, and vertebral artery issues---but he's not completely dismissive on the spine instability.

We came to the conclusion that the upper spine instability is probably part of the cause of my POTS along with the EDS. I told him caffiene made me feel good, but I get heart palpitations from it----usually delayed. It does make me feel better OI wise. He suggested green tea as it has less caffiene, and my sensitive body would take it in slower.

MY GI appt. went well also with our family general surgeon, and because my BPs have been so unstable she also agrees I'm too unstable for a colonoscopy, regular, or virtual. The virtual requires a double prep. She said there's a new fecal test that detects polyps. Because I have so many GI problems she feels it's most likely EDS related, and there's not much we can do about it. My intestines stretch out way too much, and this has caused excessive diverticuli in large bowel, and of course the huge on in my small intestine.

I really admire Dr. Grubb for being there for all of us when he is going though this very difficult time. He's a special person, and he takes the edge off of the many dissapointments from other dismissive doctors. Doctors like this give me hope. My GI doctor is also very kind and respectful. She's a great surgeon, and my brother's scar from his bowel resection was the most perfect incision I've ever seen.

I know I've been bitter about some awful experiences with Docs, and also from seeing family members treated so horribly---along with a dear friend, but there's good docs out there. However, it's like looking for a needle in a haystack. I imagine the good doctors can get very stressed from so many patients who need them due to the neglect they receive from other dismissive doctors. They have to make up for those doctors.

He asked me to have my EDS doctor send his clinical notes to him.

Dr. Grubb and his family are in my thoughts and prayers.

Maxine :0)

[ramakentesh]

yeah he is an amazing guy and second to none in treatment of dysautonomia.

[janiedelite]

Maxine, I'm so glad you were at least able to feel heard and understood by a physician. And yes, the good doctors out there are truly heroes.

[Maxine]

Thanks---

Yes he one of the best Doctors for dysautonomia, and I'm grateful for his knowledge of EDS. He's great at helping connect the dots, and also fantastic about working with my other doctors.

They don't make many Docs like that anymore--- Monday I see another good one---my EDS Doctor.

Maxine :0)

[gomindy21]

Yes, if does feel good when you finally meet someone who understands and is patient. Who is your EDS doctor?

[Maxine]

My EDS doctor is Dr. Tinkle from Cincinnati Children's Hospital. He's a geneticist who specializes in connective tissue disease/EDS.

http://www.cincinnatichildrens.org/svc/fin...brad-tinkle.htm

Dr. Wenstrup was the first doctor who diagnosed my EDS. AT first I was really concerned when Dr. Wenstrup came into the room and said, "why are you here"? I almost fell out of my chair, as we all know when a doc comes into the examining room saying those words, the rest of the appt. can't be good. However, after I told him a patient of his recommended him, and that the Cleveland Clinic said I was hypermobile, and another neurosurgeon also suspected it, he just went ahead and examined me and concluded I had hypermobile EDS.

When Dr. Wenstrup left Cincinnati Children's hospital, Dr. Tinkle took his position. Dr. Tinkle is a very kind hearted younger man---I'm thinking he has to be younger then me-----I'm 50. In doctor years I'm figuring early 40s to be young----

When I was in the EDS connective tissue study at NIH April 2008 my EDS diagnosis was changed to Classical EDS with vascular involvement, and hypermobility.

Maxine :0)

[Maxine]

Here's one of the other physician's who is one of the medical advisors for EDNF (ehlers danlos national foundation). He's also part of the EDS study at NIH.

Mark Lavallee, M.D., F.A.C.S.M.

Mark E. Lavallee, M.D., C.S.C.S., F.A.C.S.M., received both his undergraduate and medical school degrees from Pennsylvania State University. After completing a family practice residency at York Hospital in York, PA, and a sports medicine fellowship at the Crozer-Keystone Health System in Philadelphia, PA, he acquired the C.A.Q. in sports medicine and his certification as Strength and condition Specialist from the NSCA. He was recruited by the Memorial Family Practice Residency to start the South Bend Sports Medicine Fellowship, where he currently acts as its co-director. Dr. Lavallee is a fellow of the American College of Sports Medicine and has a faculty appointment as an Assistant Clinical Professor of Family Medicine at Indiana University College of Medicine. Locally, Dr. Lavallee is the team physician for area high school athletic programs, head team physician for Indiana University South Bend, medical director of the Sunburst Race (1999-Present), and is the team physician for University of Notre Dame men?s soccer team. Dr. Lavallee was lead author for the AFP Monograph Series on Fractures and Dislocations, Vol. 1 & 2 (2002). On a national and international level, Dr. Lavallee has been the medical director for the World Masters Weightlifting championships in Glascow, Scotland (1999), Orlando, Florida (2000), Kefalonia, Greece (2001), the World Masters Games in Melbourne, Australia (2002) Savannah,GA (2003), Vienna, Austria (2004), World Masters Games in Edmonton, Alberta (2005) and most recently Bordeaux, France, (2006). As a team physician and sports medicine board member for USA Weightlifting, he has covered numerous national and international events for our national Junior and Senior teams, including the 2003 World Weightlifting Championships (Vancouver,B.C.), the Olympic Team trials prior to the Sydney 2000 and 2004 Athens Olympic Summer Games, and our World Junior Women?s Team Champions in Thessaloniki, Greece (2001). Dr. Lavallee also has served as medical director for US Fencing National Championship (2000), Jr/Cadet World Championship (2000), Junior National Championships (2006 US Boxing). He is an active member of AMSSM board member and chairman of the fellowship committee.

Dr. Lavallee has Ehlers-Danlos Syndrome, classical type. He joined the Ehlers Danlos National Foundation as one of its early members in 1987. He has enjoyed speaking at many of the national conferences he has attended. Dr. Lavallee served on the EDNF?s board of directors from 2000-2005, where he created the Professional Advisory Network (nee Professional Advisory Council) He currently serves on the Ehlers-Danlos National Foundation?s Professional Advisory Network and is a co-investigator with the NIH on a study looking at Ehlers-Danlos Syndrome and Marfan?s Syndrome with Nazli McDonnell, MD, PhD.

[Janey]

Hi Maxine,

Really interesting to hear about your experiences with doctor Grubb. I'm totally here for you if you need to talk about anything or just complain about any gastro troubles or EDS issues. I've been meaning to send you some research on EDS and gut problems which my neuro-gastroenterologist sent to me the other day. Do PM me your email address if you'd like to read it as it's very interesting.

It sounds like you have a great team of doctor's around you and unfortunately I can't offer any advice as I'm just starting out on this road myself and have no idea what to try or do next. But just wanted to let you know I'm right there with you!

Janey

[gomindy21]

THanks, Maxine! The nurse Practicioner from Dr. Grubb's office thinks I have a type of EDS, and I'm just going down the road of trying find a geneticist/ dr., etc. I'm sure Dr. Lavallee is pretty understanding and knowledgeable since he has EDS. THanks again!

Edited December 5, 2009 by Sunfish
lengthy quote removed

[Maxine]

A geneticist is the best person to see to confirm the diagnosis. In my case no one suspected it until I pushed the matter due to being so hypermobile, loose spine joints, and scapula dislocation. I went to the CLeveland Clinic, and saw a neurosurgeon who thought I had it. However, this wasn't enough for me, I wanted to have a confirmed diagnosis from a geneticist. A NP is really not qualified to diagnose it, but they can tell you they suspect it and refer you to someone who can confirm a diagnosis. Either way, if it is suspected then they need to be ready to help you find confirmation.

I'm glad your looking for a doctor in genetics to confirm a diagnosis in EDS.

Good luck to you. EDS was much more serious then I ever imagined.

Maxine :0)