MS CCSVI

Anyone with EDs and MS and/or CCSVI ? I have tremors in both hands, increased loss of balance and speech impediment. I was assessed at hospital for a stroke but CT scan negative. Now waiting for ultrasound of neck veins and MRI of brain. Anyone with similar symptoms? Thanks

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Have you checked out Dr. Diana's theories and research on www.prettyill.com? This what her whole effort is about...well if tyou throw mast cell issues into the pot too anyway. Good luck!

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Will do. Thank you

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My son does not have MS but just had the angioplasty of CCSVI last month, with mostly good results. He was going to have Dr Dake do it at Stanford, but Stanford is not happy about the procedure so he had it done at El Camino Hospital in Mountain View with Dr Joye who has been working with Dake and will be doing a study there. The results with one exception have been great. It stopped the tremor in his hands and feet, took away his brain fog, fixed his slurred speech, made his hands and to some extent his feet warm up after decades of being cold, helped but did not cure his fasiculations, and stopped his middle of the night urination urges. His balance issues, muscle weakness, and POTS had already been fixed by tethered chord surgery,chiari surgery and neck stabilization. So heres the problem. My sons muscles had been very spastic (tight) which kept most of his joints from excessive movement. The procedure also got rid of his spasticity, so now his joints are very unstable. He has very bad pain in his elbows, shoulders, knees, ankles, and ribs that he never had before. I only know of a 2 other EDS people who have had the surgery and they have never talked about being spastic before and not after so I do not know if this is common with EDS. It is with MS, but I have also not read of people with MS getting the procedure and then having joint pain since many of them do not have EDS. It would be interesting to see if those with both who have had it have the same reaction in their joints.

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That is useful information. On Jan. 20 th I will have an ultrasound done to find out if my neck veins are affected. Early Feb. I will MRI of my brain. I can't wait for the results. I will share them on this forum. Thank you.

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On my way to Port Perry, Ontario, to get Doppler ultrasound to confirm if any of my veins have reduced blood flow. Port Perry is five hours from my home so I left at 5:30am. I am already exhausted and it's only 8:00am. I wonder how long it will take me to recuperate from this day? I hope that this test will give us direction to solve this mystery. I am also scheduled for two different MRI in the next three weeks and seeing the neurologist on the 9th of February. I will keep you posted. Chantal

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Like SlapASmileOn said, you should really check out prettyill.com. Mrs. Driscoll has really been doing some amazing research in those areas! Especially w/ the EDS related side :)

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I have read and seen every video on prettyill.com. It is very interesting. I am waiting for the report which should be sent to my Dr. within a week. I was given a disk of my ultrasound but don't really know what to look for. All I could ell is that one side of my neck is definitely different from the other. Now all I can do is wait. Thank you.

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Results are in for th CCSVI test. I meet three out of five criteria. One is considered to have CCSVI if he ir she meets two criteria or more. I have severe stenosis and an obstruction in both internal jugular veins. Still waiting for results of MRI that are forthcoming. I can't wait to see if the neurologist will be on board with this.

Best wishes to all!

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Bean1, I am far from an expert but it sounds like your son may be experiencing EDS symptoms now... lax joints and subluxations. His body is probably going to need time to readjust. There is a reason most of us have a closet full of braces. Most of us have a set for each joint I would guess. I know I don't have to wear them all the time, but I have them for when I need them.

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Yes he is experiencing eds symptoms now which were kept at bay by the spasticity. We were so surprised when he got his eds diagnosis because he was not showing signs of hypermobility that were obvious except his hips.

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Hello my friend,
Wow, you watched all of my videos? You deserve a medal! :)
Is one of your internal jugular veins much larger than the other? (I'm just kind of curious if it is on your right hand side).
I certainly went through the symptoms you described!
Do you have any of the autonomic symptoms (gastroparesis, POTS, erratic heart and BP, etc)?
And again, just curious, do you have any problems sleeping on your back? (ever feel like you've been 'paralyzed')?

I am working like the proverbial dog, wrapping up Part 2 of The Driscoll Theory, and I'm willing to bet you'll see your symptoms there and understand the reason for them. Meanwhile, I'm trying hard to hunker down to get this and some other research DONE, but if you'd like to contact me through my contact page at Prettyill.com, I may be interested in writing a case study about you. I humbly believe I know what's going on, but need a bit more info to fill in the gaps.

OK, I've reached my 10 minute social media deadline! Back to work. Hang in, my friend. You are not alone FOR SURE.
:) Diana

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yes

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