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Surviving and Thriving with Chronic Illness

The Driscoll Theory Validated!

Join Dr. Diana as she discusses how the experts in EDS, Joint Hypermobility Syndrome, and autonomic function ("POTS", dysautonomia, etc) speak about how treatment based on The Driscoll Theory results in definite improvement of patient symptoms! Have you been waiting to hear about validation of The Driscoll Theory? This will get you started in understanding the experiences of some of the top experts in the field.

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That was a FANTASTIC video!  CONGRATULATIONS Dr. Diana!!
It’s great how you included past videos and conferences to help us learn the time line of significant issues and breakthroughs concerning your work.  You’ve done so much to help us who have invisible illnesses and now at last, the experts have validated your hard work!!

Great news! Thank-you for all you do!  smile

Slam dunk, Dr. Diana!!  On a personal level, you have changed my life when I took a leap of faith and tried your treatments for my EDS/dysautonomia.  On a professional level, you have done everything in your power to help spread the word about your theories so that doctors can better help their EDS patients.  While you often haven’t received the recognition for your ideas which you deserve, clearly the evidence is now proving that you have been correct all along and some of us remember who said it first!  Thank you for continuing to work tirelessly on this despite your own illness and all of the barriers you have faced.  I am anxiously awaiting the release of the next phase.

I am so proud of you!!!

Congratulations Dr. Diana! You go girl! I looked for an email contact for you but seems the ones offered don’t apply to my reason for contact. I was wondering if you or anyone knows of an attorney or fellow EDS’er that has had a EEOC Charge of Discrimination regarding their EDS. My employer knew I had 2 previous ACL surgeries on my left knee and it still needed a third. Then I tore my right ACL and needed surgery for that one as well. My HR mgr. told me I needed to resign or be terminated. I refused to resign, told her I thought I had EDS and needed diagnostic testing and treatment, and she fired me after I kept refusing to resign. Since the ADA was amended, there is much attention to the way the federal judges further define the “minor and transient exception”. This is what my employer claims. I’m hoping my case will set precedence for future rare disorders being discriminated against. While an ACL injury has been seen as transitory (lasting 6 months or less) in the courts, it is not minor and since I already had an existing disability and 2 previous ACL surgeries needing another shows something “just ain’t right”. There are several factors at play here. A pre-existing physical disability, the fact that my history of ACL surgeries were not transitory, and the fact that I said I thought I had EDS and needed medical care. I researched case law and an employee can say they think they have a condition such as depression etc… and still be covered under the ADAAA. grin Do you know of any Attorneys with significant knowledge with EDS?

Proud and excited for you!!!

Diana, congratulations! I am so proud of you. I have EDS lll (and everything that goes along with that) and cvid and I am treated with ivig. I watched Dr. Francomano’s presentation on youtube.  When you two crack the eds/cvid code!!!!!!!!!!!!! What can I say, you have already done so much!

Dear Dr Diana, it was like a miracle finding a doctor who experiences similar symptoms to me.  I hope you don’t mind if I share some of my symptoms.
Age 6 Pneumonia in hospital.  Age 6 to 12 Vivid dreams, sleep paralysis, have now.  Asthma, but no asthma attacks.  Age 14 to 16 Frequently ill, missing a year of schooling.  Chronic fatigue, pleurisy - hospital for 1 week loosing over 14 pounds in weight.  Depression.
Age 22, 2 miscarriages.  2nd miscarriage terrible pain and stayed in hospital for few days.  First baby, difficult back to back birth.  Lost a lot of blood and stitched following birth for 5 ongoing hours to repair tear.
Migraines.  Hard to bare.  Experienced constant nausea and pain.  Last 5 days to a week, stop for a week and start again. - Pain in neck with weakness/flu like feeling in shoulders.  Prescribed propranolol which has helped.  Now vomit with migraines, so nausea and weakness more severe.
Pains in vagina on and off with clicking joint.
Pregnant with fourth child, had Hyperemisis, extremely ill.  In hospital for a number of days on drip and other medicines to help.  With it had constant migraines, flu like feeling with terrible weakness mostly in shoulders, rest of body weak too.  Terrible nausea and excessive saliva.  Too ill to get out of bed, wash, brush teeth etc.  Ill in each pregnancy for first trimester, worse each following pregnancy.  Ill for weeks following birth of each of my children with terrible weakness, migraines and depression. 
30 years old.  Chest pain.  ECG came back irregular, went to specialist, didn’t check me, said I was too young to have heart problems.  I get frequent muscle pains in chest.  I think they might be inflamed ribs as my mom gets that to.
The past 5 + years had uncontrollable sleepiness when driving more than 15 minutes.  Dangerous, so saw doctor and explained situation.  Went for sleep study which showed constant waking episodes through out sleep, one of the symptoms of Narcolepsy.  Always been a light sleeper.  Specialist believes I have a form of Narcolepsy and prescribed Modafinail.  I also had terrible weakness, so was prescribed Venlaflaxine which helps. - Weakness would mean I had to lay down feeling flu like symptoms.  Uncontrollable sleepiness also happened when I wasn’t driving.
Ongoing symptoms - Wrestless leg syndrome, occurs throughout my body.  Body jerks when trying to go to sleep and relaxing in day.  My body struggles to regulate its temperature.  Excessive sweating on face, head and body, even in cold weather.  Daily neck pain and headaches for 10 + years and makes me feel ill.  Shooting pains down arms, especially right arm.  Clicking aching jaw.
Tongue tingles, also around mouth and at side of eyes.  Face has had tremor.  In very cold weather I get extreme pain in chest and struggle with breathing.  Hands tremor at times.  Recently some veins bulging, causing bruised bumps.  Right wrist very weak, painful when driving and doing jobs.  Feels broken at times, even though isn’t.  Have swollen fingers when waking in night and morning.  Fingers would also be bent to the side at times when I would wake.  Saw Physiotherapist about wrist and she said my right hand and wrist are a lot weaker than my left and thinks I have Hypermobility.  In bed my right wrist can suddenly seem to pop out of place for no reason.  Burning sensations in legs.  Pins and needles in fingers and toes.  Weakness in right knee.  Knee gives way, seems to click out of place.  Exercise and pain makes knee worse.  My left knee has started to feel similar.  Doctor could see my knee move more than it should and sent me for MRI, came back normal.  Vaginal Prolapse and Rectocele, causes many symptoms and need operation very soon.  Symptoms getting worse, so now I can not put off surgery.  Afraid of surgery as I get very weak and don’t know how it will effect me. - Symptoms are trapped urine, trapped bowel movements, prolapse protruding outside vagina.  Have to push on bulge to have bowel movement.  Soreness in vagina.  Pain with intercourse and after.  Trapped wind, constant bloating, nausea and pain.  Having to stand to wee.  Not able to empty bladder or bowel fully, having to go back to toilet after I have just been.  Diarreah which gets blocked and causes unbearable pain.  Diarreah is worse symptom prolapse, thankfully doesn’t happen too often.
Slight tinnitus.  Petechial rashes different places on my body.  Feel weak/low in sugar daily, need to eat something to feel better again, normally sugary. - Tested for diabetes, came back normal.  Always had low blood pressure, two recent blood pressure tests came back high.  Advice would be really appreciated.  My children show a few similar symptoms.  Not sure doctors will take me seriously.  I would like to call you for a telephone appointment, but I might have looked in the wrong place on your sight, help with that would really be appreciated.  Thank you so much.

 

 

 

Thank you so much Dr. Diana for your tireless grin efforts to help the EDS community as a whole and to improve so many lives! <3

I have been wondering…. If something I lived with for many years is related to CCSVI, POTS, EDS, TMJ Dysfunction, or all the other disorders and syndromes that comes with EDS. I suffered for years with this problem and still have found nothing like it in my research except for a possible link between: TMJ, carotod artery, jugular vein, CCSVI, POTS, EDS, and anxiety! This is an example of what I experienced and thought I was going mad! I would be walking early in the morning through a very quiet area, I could hear and feel my heart throughout my whole body, and everything I heard would seem like it was in concert with my pulse like when a plane passed over or the sounds of my foot steps! My anxiety would go through the roof and seemed to make things worse as when I got to where I was going and there were many noises and I was involved in conversations, the madness would cease to exist and so would the anxiety! Is this normal? Related to EDS and co-existing stuff? hmmm.

Oh my god, you are the greatest thing ever. Ever ever. Thank you thank you thank you *tears*. Please don’t ever stop what you do. How can we all help you to move faster? Can we help fundraise? Promote? I want to help you help us. And i’m sure I’m not the only one.
You’re amazing. Biiiig feather-light hugs to you

Hi Diana,
I don’t know if you remember me and my two girls, we are from Maine. They have EDS,Chiari,POTS, and you suggested we go to Dr Francomano. She confirmed EDS and ordered upright MRI’s, which a year later we finally got at Fonar in Long Island NY. We invited you to join the group but you couldn’t, I wanted to know did you and your kids ever have upright MRI’s? I feel like you know the importance of upright versus recumbent, but if you were unable to do them I think I can help get them done for insurance and the rest free. We have pursued treatments, and dr’s you recommended but unfortunately my oldest (20) is getting worse and maybe we need more help from you. Could you please email back for more detailed info and we can see about setting up a consultation or whatever you do, I am VERY worried about her. Please answer this as she is going downhill really fast…...and at this point I don’t know what t do…thank you, pam

I’m pleased for you in America and for those with the money and access to people who can do something with this but I find it really depressing…My daughter and I have only got as far as we have because I knew more about EDS than the “specialist” doctors who are meant to help us but this is too complicated for me to understand…how can I aproach my doctors with a confusing list of intercranial pressure, mast cells etc etc when they think EDS = hypermobile joints FULL STOP.
I am having trouble finding understandable information on here so can you point me to a page that has all the information a doctor needs that I could send before my next appointment - the follow up to a laying down MRI that won’t show anything obvious enough for him to see -  to try to save him sending me off yet again without help?
Sorry,  I do know this is good news but getting help just feels even further away.
Brian UK

My natropathic doctor just made homeopathic Cromium Sulfate for me. Any thoughts?

Great job. Thank you so much for all you do for all of us. God bless and gentle hugs

good day dr. diana,  please accept my heartfelt thanks.  i recently discovered you and your incredibly informative site; slowly viewing all and learning more with each visit.  looking forward to your future publications.  with kindest regards, cordelia

Chiari malformation is han and hand with this too.  I am interested in trial for poor motility of bowels.

Interesting

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It’s incredible how you included past recordings and gatherings to help us take in the course of events of noteworthy issues and achievements concerning Write my Research Paper for Me your work. On an expert level, you have made every effort to help get the message out about your hypotheses so specialists can better help their EDS patients.

The Driscoll Theory, authored by Dr. Diana Driscoll, an EDS patient herself, is a groundbreaking explanation of why some EDS patients are so ill with neurological and autonomic symptoms. The ‘real’ title of the theory is: Custom Essay Writing The Role of External Communicating Hydrocephalus, Mast Cell Disease and CCSVI as the cause of POTS (Postural Orthostatic Tachycardia Syndrome) in Ehlers-Danlos Syndrome

Those of us who have been helped (blessed) by this theory, are more than content to refer to it as ‘The Driscoll Theory’. Actually, at my house, we don’t think of it as a theory at all – it is simply proven fact to us. We were convinced that my daughter’s neurological and POTS symptoms were caused by cervical instability and the only treatment was a fusion. We were fortunate to find this theory and have been able to avoid surgery – my daughter is benefiting amazingly from finally having the proper treatment and is feeling so much better these days. Early Childhood development I am dedicated to sharing this theory with as many EDS families as possible.