Trach

Rich, I have the same exact pain as rubytuesday (and the pain you are describing). I have pooling in my legs and had Doppler tests and EMG's to try to address the cause of the pain. I did not find out the answer until I was diagnosed with EDS hyper mobility and saw a pain specialist.

Welcome Kari! I am so glad you found your answers and Dr. Abdullah is helping both you and your daughters. Trish

Rachel, thanks for finding the information that Grinch is copyrighted. Hmmm.....I am not advocating anything at all, but I am going to send a letter to Dr. Seuss Enterprises, LP.

This is an off the wall idea, but I wonder if there is any kind of copyright infringement by using the "Grinch" name.

I finally remembered the name of the doctor from my text above. Maybe this link may be some help. I do not think the lab is just for pregnant women - I hope it may help answer some questions. The site has a lot of information on antiphospholipid syndrome. http://medicine.utah.edu/Branchlab/ Branch Perinatal Laboratory The Branch Perinatal Laboratory is one of the most well-known labs in the country for Lupus testing. Dr. Ware Branch is internationally well-known for his work in Antiphospholipid Syndrome, recurrent pregnancy loss, and thrombotic disorders of pregnancy. The Branch Lab offers a series of testing which include: Lupus Anticoagulant, Anticardiolipin Antibodies and Anti- β2-glycoprotein I Antibodies.

After I had a stillbirth during my first pregnancy at 20 weeks, I tested positive for antiphospholipid syndrome. I do no recall the number range. My body had produced blood clots and cut off the baby's blood supply in the umbilical cord. During my subsequent pregnancies, I was tested several times and never tested positive again. My doctors believed my original test was a false positive test. I took a baby aspirin a day and was closely monitored by a high risk doctor and had two successful pregnancies. Because the antiphospholipid test can vary so widely, my doctor at the time, Dr. Valerie Parisi and later her partner insisted on sending my blood work to the doctor who developed the test. I do not remember his name but his lab was located in Utah. Dr. Parisi said she had too many problems with inconsistencies in both false positives and the levels. Recently I have seen many doctors and when I tell them my history, the doctors frequently say that there is still a problem with consistencies with the test. So, if I were you, I would get retested just to be sure. If you are interested in finding the doctor and the lab that developed the test, I can try to find the name in some old records. I hope you find an answer soon, Trish

I have found I cannot tolerated BB's even on the lowest dose. The last time I tried a BB, my cardiologist said I had to give the drug seven weeks for my body to adjust to side effects such as severe fatigue as Sonya is describing. I gave up at 6 weeks on 1/4 of a dose - my bp kept going too low and I felt like I was in quicksand.

Hi Summer welcome! I am so glad you have already found supportive doctors. Dinet has many wonderful, knowledgable, and supportive members. I have not had the hematocrit problem, but recently was diagnosed with a genetic clotting a mutation. My geneticist ran a thrombosis genetic test after she diagnosed EDS hyper mobility. I am telling you this because i have occasionally had strange reactions that no one could explain. Now the clotting mutation answers many of the questions. In addition to the Dinet site, you may find some additional support on the EDS site http://www.inspire.com/groups/ehlers-danlos-national-foundation/. I hope you find your answer soon.

So what will you do next?

Tennille, I have trigeminal neuralgia and TMJ pain. The only thing that has worked for me is a nerve block. I have had it done by a pain specialist/anesthesiologist and also by a neurologist who specializes in pain treatments. I also have EDS hypermobility type. Although my nerve blocks did not last as long as most patients (the first trigeminal block lasted approximately 2 months and the second approximately 4 -6 months ) the relief was amazing. No more ear and jaw pain! I was just diagnosed by a geneticist who specializes in EDS. Since that time she has set up referrals for a pain specialist and a cardiologist who understand EDS and POTS. If you can find a doc who specializes in EDS regarding your pain you will be much better off. Prior to my diagnosis I made an appointment with a well recommended neuro/pain doc for migraines. When I met with him last week, I updated him on my EDS diagnosis. He told me the problem I have had with my left hip most of my life was physically impossible yet my problem is discussed on the EDS boards. I hope you feel better soon.

I have not emailed Levine, but since I just found out I have EDS 3 I am 99% sure EDS 3 is the cause of my daughter's POTS. So now it makes sense that a combination of swimming, weights, and running 1.5 -2.5 hours per day during the week improved her POTS but has not "cured" her. She still has flares.

Nowwhat - I am so sorry to hear about your experience. Marti - thanks for the info on Dr. Shabani. I did not know about him. I am like you - I also need a neurologist to tie it all together.

Nowwhat- thank-you for your advice. It is a great idea. Right now my health is not that great but if anyone is interested - please PM me. If I would like to try to give you some more data to what Sue is trying to explain. The frustrating part for us is that Houston has the largest Medical Center in the World and top rated hospitals and medical schools. We are long overdue for a POTS doc. Here are some stats about the Houston Medical Center: Member Institutions – 49 (includes 25 agencies of government and 24 private not-for-profit health institutions) 21 – Academic Institutions 13 – Hospitals 15 – Support Services Organizations Buildings – 140 Employees – 93,500 Annual Patient Visits – 6.0 million International Patient Visits – 18,000 Daily Visitors – 160,000 Regional Annual Economic Impact - $14 billion Size – 31 million gross square feet of patient care, education and research space, equivalent to the 12th largest business district in the United States Acres – 1,000+ approximately the size of Chicago inside the “Loop”.

Dear all above I was diagnosed Friday with EDS 3. I am really having a difficult time right now with migraines, POTS, and joint pain. I have an appointment with a new neurologist/pain specialist on Tuesday. Originally I made the appointment for my migraines, but now with the EDS diagnosis (i was originally scheduled for an EDS geneticist in May but due to a cancellation, got an appt. at the last minute) everything has changed. Do you have any recommendations for me prior to seeing a pain doc? I am having severe hip pain and general joint pain in addition to migraines. I hope to start aqua therapy next week.

Yesterday I was diagnosed with EDS 3 at Baylor Medical Clinic in Houston (I saw a geneticist first - scored 9/9 on the Beighton scale plus met other criteria - soft skin, loose skin, joint pain, etc. Because I live out of town, they were able to get me in for an immediate heart echo, bone scan, and blood test). The care was amazing. Prior to her early retirement, my sister went to med school and did her internship and residency with one of the administrators at Baylor - a great guy. We will call him Dr. P. I have known him since i was a kid. I stopped by to tell Dr. P how impressed I was with my experience AND to plead for help with finding a POTS doctor in Houston. Dr. P told me a couple years ago that he had been part of Baylor's autonomic lab approximately 20 years ago and coordinated research with Biaggioni at Vanderbilt. The lab was closed when doctors at Baylor decided the old method of testing - Injecting a some sort of stimulant was too dangerous. Dr. P told me he knows that the Houston Medical Center are facing the following issues: 1) The Baylor autonomic lab was torn down during the last construction. I told him that Texas Children's in Sugarland received a grant for their autonomic equipment. 2) The prior autonomic lab lost money. I told him the POTS doctor I saw in Dallas added his third location. Dr. P was very surprised. We talked about new Mayo estimates about number of people affected and how dysautonomia doctors have been inundated with patients. 3) The biggest problem....recruiting a doctor to relocate to Houston. I did not have an answer for that problem. Dr. P told Baylor/St.Lukes are referring their dysautonomia patients to Vanderbilt. I told him Vandy is great on diagnosis but finding a doctor in Texas to follow through with a treatment plan can be difficult. 4). Dr. P acknowledged the medical community is aware of the issue. That is why a syncope/ POTs seminar was held by various Houston docs last March. I'd like to start a letter writing/email campaign to help find a qualified doctor. If any of you are interested in helping please pm me.

Effexor was a miracle drug for both migraine and POT symptoms until the drug lost its efficacy.

Rama, So can you please somehow explain to my husband that I cannot control this? .

I am so glad you got it worked out and best of luck on the testing! One of my sisters is in the medical field. If an insurance company tried to deny necessary coverage for one of her patients, her most successful argument when all else failed was to threaten to report the insurance company to the state board of insurance. She says it worked every time. One other totally stupid rule I have discovered. If you are hospitalized, approval for testing is not a problem at all. The system does not make sense to me at all.

This site may help explain what test is best: http://www.herniated-disc.net/herniated-disc-exams-and-tests-for-diagnosis/

My daughter gets the same red, hot face during a flare.

Prednisone Side Effects - for the Professional Prednisone (listed alphabetically, under each subsection) The following adverse reactions have been reported with Prednisone or other corticosteroids: Allergic Reactions anaphylactoid or hypersensitivity reactions, anaphylaxis, angioedema. Dermatologic acne, acneiform eruptions, allergic dermatitis, alopecia, angioedema, angioneurotic edema, atrophy and thinning of skin, dry scaly skin, ecchymoses and petechiae (bruising), erythema, facial edema, hirsutism, impaired wound healing, increased sweating, Karposi’s sarcoma, lupus erythematosus-like lesions, perineal irritation, purpura, rash, striae, subcutaneous fat atrophy, suppression of reactions to skin tests, striae, telangiectasis, thin fragile skin, thinning scalp hair, urticaria.

I have never had that reaction before but I would only take prednisone in the morning or you will never be able to sleep. 60mg. is a high dose to try the first time especially if you are prone to reactions.

My husband keeps waiting on a cure. Although he has done his own POTS research, every new doctor I plan to see he will ask "will this doctor cure you? ". (he knows it is not that simple). And then he usually goes on to talk about how the last two years of my homebound life have been a waste. I don't particularly see my life that way, but my husband does. Thankfully I have a loving family and great friends. For most of our marriage I worked, helped to take care of our kids, and volunteered. When our youngest daughter got sick, my husband and I fought for the first two years of her illness because he didn't think she was that sick and I was enabling her. As he finally started to accept her illness, I started to get worse. On top of all of this, my mother had moved from Dallas to help me with our kids after my father died. Two years later my mother was diagnosed with early onset moderate dementia. In my husband's job, he makes decisions about peoples lives every day. He is in control. He is so frustrated that he can not "control" my outcome. To make matters worse he grew up in a family that firmly believes in "mind over matter". I really do not know what is going to happen in the future. Hopefully I will find that cure

I am so sorry - I have been there. Soooo..... Difficult to eradicate. Apparently lice like the cleaner the hair the better!

I wrote something similar about an experience with my daughter except we had the CT and it showed a lower disc perforation. My daughter was in excruciating pain upon weight bearing and had been hospitalized. Our problem was the sports medicine specialists said she should not be in pain. It wasn't until a physical therapist with a PHD in physical therapy reviewed the CT and confirmed the type of pain she was having. She was given a TENS unit and eventually had PT for the injury. I was told later the attending doctors believed my daughter was faking her pain because she did not scream and cry out loud. I highly recommend seeking another doctor or a physical therapist with a PHD. If a doctor will not address your concerns, it is time to see another doctor.