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Surviving and Thriving with Chronic Illness

Dr. Diana’s talk at the Second Annual CCSVI Conference in NY

Dr. Sal Sclafani welcomes Dr. Diana as she speaks about CCSVI, EDS, MS, mast cell disease and her ideas on preventing restenosis post-angioplasty. (Correction - there are no mast cells in the kidney. There are mast cells in the bladder.). smile
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This was great! Thanks Dr. Diana! I’m sharing this with my CCSVI Oregon Facebook group!

I have so many things how could I be tested, I have MS, CVD, spina bifida, fibro, Sjo, and who know what else, I need help I am in so much pain.

Dear, Dear Bendy,I know what you’re talking about - not from eosrpnal experience but from the experience of my wife.  As a young girl growing up she went through that whole thing of no one believing her.  She has Ehlers Danlos, although hers would seem to be not quite as profound as yours.It has gotten progressively worse over time.  The thing about EDS is that things stretch - and they don’t snap back.  They just stay stretched.  Her older sister was diagnosed with the same condition - and THEN, and ONLY THEN, would they believe Annie.  After years of complaints.I understand you and your pain.  I wish I could do for you as I have been able to do for Annie.  I massage her back and ankles and knees every night - to give her ease so she can sleep.  And then she gets up the next day and fights her way through to the next night - and the next massage - and the next night’s sleep.  One day at a time.  One massage at a time.  I would do for you, if I could.  I feel so badly that I can’t.

Hi, I am hoping to learn more about CCSVI, I am scared to death and I also feel it.  I have chiari, pots unspecified CTD, not EDS 3 brain surgeries underbelt..1 yr post op last surgery had a sinus thrombosis startin of this year and I have not been well since.  NS is getting ready to do icp monitoring and suspects CCSVI, I am so confused and so very ill

Just a quick update, everyone! Research has been evolving quickly. Most of us have found that angioplasty for CCSVI has not been helpful in the long term, sadly. I had a few days of feeling better, but my son became more tachycardic for a couple of days, then returned to his usual “lousy”! :( I am working on treating the CAUSE of our likely venous hypertension and change from collagen 1 to collagen 3. Meanwhile, if you have symptoms of hydrocephalus, Diamox may be a big help for you. Mast cell treatment is also very helpful, but I’ve found that we have a few more “layers” to our illness, and I am working on that now. Answers are coming, and I’m looking forward to sharing everything ASAP. You may want to join the forum here on this site, as I’ll use the forum as a place to disseminate the trials and information. Hang in, my friends. wink Diana

Would this be causing all the pressure I am feeling in my head neck and upper chest?  Also the pulsing of my heart rate that I hear mostly in the left ear but lately I hear it in my right ear at times?i know my left carotid has some build up. The guy that did my ultrasound said the the build up was not enough to have surgery, but the doc may look at the blood flow and decide if something needs to be done. But doc said nothing. My eye sight has gotten so bad in the last couple of weeks. It’s like I’m looking through a fog.

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I have been having intermittent days of blurry vision that doesn’t always last a full day. I thought this may be related to POTS and/or MCAS. However, after watching this video I believe it may be related to facial numbness that seems to also be intermittent and numbness on the left side of my nostril and tongue down to my stomach. When I drink something cold, I can feel the coldness go down the right side of my throat and when it hits my stomach, I can feel it radiate towards the right side. I feel absolutely nothing on my left from tongue to stomach. Could this be due to CCSVI and pressure on my nerves?

I forgot to mention that I have different episodes of sudden onset double vision in both eyes after straightening up from bending over at the waist for example while looking in the back of the top shelf of the refrigerator so it’s not even completely bending over as if touching my toes. I have had an MRI and CT with contrast that shows “an area of previous insult” and several areas of high FOCI? in white matter and other areas but the ER doctor told me my MRI and CT were normal! Thanks Dr. Diana for advising to get your Raw Data! So MS is a possibility and still needs to be looked into.

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Dr.Diana made a great and very interesting research and shared her ideas on the conference in NY. In case you want to write a dissertation on this topic I would recommend you https://essayrepublic.com/ professional writing service. Thanks for a great share and keep up this great work!

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