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Surviving and Thriving with Chronic Illness

National CCSVI Society Meeting—my talk

Dr. Diana's talk at the National CCSVI Society Meeting. If you have M.S., EDS, or any of our other "family" of conditions, it's a must see!
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Hi Diana:))
Tried sending this before..don’t know if it worked..don’t think so.
I am so honoured to have watched your videos and listened to the one at the conference in Sydney B.C. (Canada)
I have M.S. (whatever that is) and POTS and SVT’s and a partially prolapsed mitral valve and a hypothetical diagnosis of MCTD and Raynauds phenomenon….and celiac and RA or something like it.
I have heat/cold intolerance (severe)..osteoporosis..all of the sequelae associated with the 5th cranial nerve dysfunction..(trigeminal neuralgia) severe ear pain and “ice pick” headaches..oh, the list goes on..(IBS as well)!
My daughters are all affected with similar issues such as Crohns disease and ADHD (inattentive subtype) that is one daughter
the other with life threatening asthma and low iron issues as well as emotional issues
the third born with Epilepsy..enlarged venticles..head circumference..big!! (also ADHD Inattentive subtype and LD and anxiety disorder) she is also hyperflexible (double jointed) and has extra-ocular eye movements
My son now diseased..was born with two tumours at the base of his spine (undifferentiated sarcoma)..lived for thirteen years and he was a twin who I lost inutero:((
I have created a family “pattern” document..which I keep for the girls so that they are aware of our history because generally I am dismissed by “professionals” except for a few who have listened…Please let me know if you would be interested in “following me” or if I could help you in your path of research…I read and read and read..when my left eye lets me….Ruth -Ann Neil..take care..look forward to communicating with you

Hi Zach,Thank you for reaching out and I will be seindng you a personal email.Meanwhile, for pain without medication, sometimes a TENS unit helps. Your doctor should be happy to help you get one. I’m not certain if it distracts the nerves, or blocks the pain sensation, but it does help. Some people find relief with ice, others with heat (I alternate!). Now, don’t laugh, but laughing helps! Once I was lying on the floor feeling just terrible, when my son (your age, BTW) came in and told me that when the coach went up for a lay-up shot in basketball, his pants fell off. I burst out laughing, and felt great. It actually changes the brain chemistry.Have you tried massage, too? Be sure to tell them to be VERY gentle, especially with your neck.Are you taking magnesium? That helps some, and you can even put Epsom salts in bathwater to absorb more magnesium. We are ALL short of magnesium inside our cells.Zach, it certainly sounds like you have POTS to me. I’ll include the geneticist’s name and # in my email, OK? If you ever decide to go for the drugs (nothing to be ashamed of, but I understand why you’d want to wait as long as possible), Cymbalta tends to work well for us.Please keep in touch, OK? My son also has POTS (he got it at around the age of 8), but he is doing much better now. Just try to take it a day at a time.Here’s a BIG hug,Dr. Diana

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