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Hi all,
I’ve read conflicting information over the last couple of years. I know that a virus triggered my autoimmune response which then turned into a slew of other symptoms and disorders. I know people with MS who have CCSVI and people who don’t.
I’m wondering what the thoughts are on this. Many doctors believe MS is just a symptom and should not be classified as a disease. The term “MS” simply means many scars (plaques). In my case, I did not have symptoms of CCSVI until long after my MS (still undx and hoping to stay that way) symptoms began. This leads me to believe that maybe the MS is causing my CCSVI symptoms and not the other way around. I wonder, can this happen?
Of course, I’d love to believe that I have CCSVI and once corrected, my brain could get proper blood flow and oxygen and possibly even remyelinate where there is damage. I believe, but again, have not been told this by a professional, that my BBB is devastatingly permeable. (Why?) I have CNS reactions to just about everything. Also, is having a positive ANA more indicative of this really being an autoimmune problem rather than just general inflammation? I find conflicting responses to this also.
Perhaps this is just a bunch of jumbled thoughts on my part, but I’m wondering if I am searching in the wrong places for help. I’ve seen several neuros, including MS specialists (my lesions are large but they say they are not MS – I don’t believe it), cardios, endos, etc. I’ve been around the block one hundred times. I always come back without a solid dx outside of being ‘a patient with many long term health issues’.
I could get into every abnormal test, but I won’t do that.
I’m interested in hearing what people have to say about these connections (or lack thereof, ha!).
I’m at the end of my rope here. I’m on year 8 and progressively getting worse. Neurodegeneration is awful. Histamines are awful. Dysautonomia is awful.
Where do we go from here, and in the same breath, who is even here where I am?
Hi. I’m in a very similar boat. My last CT showed LOTS of calcifications and hyperintensities. No MS dx Though. Fine by me. I have plenty of symptoms too but plenty of issues that COULD be causing them.
Where to start? Start by reading the Driscoll Theory, part 1 and 2. Dr D really gets in to how these issues are all related. Make sure you have the mast cells under control with histamine an proton pump inhibitors. Where to find a doc who gets it? Dr Francomano in Baltimore, Dr Castells in Boston, or Dr Afrin in either North or South Carolina. Any doctor can work with us IF they are open minded, willing to listen, and to go learn. My best Docs are Dr Francomano, my PCP, and my physical therapist. Dr Henderson is also up there too on the Neuro end of things.
Hope this helps in some way. You certainly are not alone here.
I’m currently reading Part 2. 🙂
Thanks for your response. I’m always soothed yet sorry to hear that someone is in the same boat.
I do believe that the way to find answers is together.
Wishing you all the best of luck in your own journey.
Jen
Any of this may be subject to suggestions specific to EDS/POTS that I don’t understand yet, maybe Dr Diana can weigh in on this overlap. always start with the least invasive approach, which might be the medications she suggests.
I am coming at this from an MS perspective, and have been treated 4 times w/ stents. I started early with the first group treated at Stanford in 2009, and now there is better understanding, so it takes fewer treatments now, depending on your tendancy to re-stenose. Also, they try to steer clear of stents now if possible.
Here is the info published by CCSVI Alliance on diagnostics
http://www.ccsvi.org/index.php/the-basics/diagnostic-approaches
They have lots of CCSVI info, and also check for interviews w/ the experts at the Feb 2012 conference,
http://isnvd.org And more education at http://thinkccsvi.comThe non-invasive doppler is the best way to start, $500-900. Best place for this is http://ccsvi.azdoppler.com They are trained in the Zamboni protocol. They also travel to other cities too. This can see jugulars, renals, iliac, cerebral veins, but not azygos.
If you get a hit via doppler, I would just go for the venogram, because then they fix it if they find anything. The Haacke MRI is nice to have, but more expensive. Work with the provider on insurance coverage, let them contact your insurer for pre-authorization etc.
For the venogram, stick with an interventional radiologist clinic who is part of an IRB approved trial/registry, like the Hubbard ccsvi registry, they have a map http://www.hubbardfoundation.org/CCSVI_locations.html
An IRB approved trial offers better patient protection, and benefits future patients because your results are tracked and compiled into a study that will be published.
Last thing, an interventional radiologist is not trained to treat the deep cerebral veins, that is reserved for an endovascular neurosurgeon, and so far we don’t have any treating CCSVI. Keep your results if this is the case, get the veins treated you can, and we’ll have to wait on the cerebral veins for now.
Any of this may be subject to suggestions specific to EDS/POTS that I don’t understand yet, maybe Dr Diana can weigh in on this overlap. always start with the least invasive approach, which might be the medications she suggests.
I am coming at this from an MS perspective, and have been treated 4 times w/ stents. I started early with the first group treated at Stanford in 2009, and now there is better understanding, so it takes fewer treatments now, depending on your tendancy to re-stenose. Also, they try to steer clear of stents now if possible…
Last thing, an interventional radiologist is not trained to treat the deep cerebral veins, that is reserved for an endovascular neurosurgeon, and so far we don’t have any treating CCSVI. Keep your results if this is the case, get the veins treated you can, and we’ll have to wait on the cerebral veins for now.
Thanks for all the information Sammy Jo! Thank you for being a Ccsvi treatment pioneer!
I wasn’t aware you’d be treated FOUR times, I – pw’MS’- was treated once -2011- by inexperienced, yet
earnest Vascular surgeon…my insurance paid — a Vascular condition NOT ‘MS’Q. am I delusional or hasn’t it been determined that Int.Jugular Veins are NOT inherently ‘at
fault’ in creating the Stenoses? – oft times it IS the Valve that’s malfunctioning
and once That Valve is destroyed/ etc. — wha la! ‘normal’ valves?So grateful for all that Dr Diana is doing to help look at the Bigger Picture of Ccsvi,
etc.Katherine, I have had CCSVI angioplasty twice, both times having the valve treated and my left jugular will not stay open. After my first CCSVI procedure I felt wonderful relief for about 6 weeks and then it started fading pretty quickly. When I went back in for round two (initially for a separate issue, but my IR looked around since he was already in) all my stenosed veins were as narrowed as before, except for my right jugular which was still mostly open, but my left was even worse than the first time (and most, or the worst of my symptoms are on left side). I also had a stent placed in my left iliac for May-Thurners. I also realized later, after learning so much on this website, that I had had a mast cell episode the day before my 2nd procedure (heat triggered) and I’m sure that did not help things (since I was not on any mast cell stabilizers at the time, etc.). So, treating the valve is not necessarily the only component of getting a good result.
Ever since my 2nd procedure last July I have a achy pain and hardness in my neck where I think my left jugular is and my symptoms have gotten worse. I wonder how blocked it is now.. it was 80% in July and 70% at my 1st procedure. Wouldn’t doubt it is 90% now.
My IR says I need stents in that jugular and my azygos (it won’t stay open either.. it has a web across it that does not resolve with angioplasty) but wants me to try to wait it out till the dissolving stents that are being developed in Europe are available in the US (4-5 more years!). Though at this point, with Dr. Diana’s information about the vagus nerve being pinched between the artery and the jugular in the sheath (and I have POTS) I would now be afraid to get any stent in there that might further pinch the vagus nerve.
I do have a great primary care doctor who watches Dr. Diana’s video’s and has read part 1 and 2 of the Driscol theory – yeah! He is trying to figure out the next steps he wants to take with me based on this new information. One of the things he is wondering is about cutting open the sheath to get the pressure off the vagus nerve. It would seem to me that if the pressure was removed then the mast cell/cytocines/TNF and all the autonomic stuff should clear up, if it is caused by the vagus nerve compression. Am I reading this wrong or missing something?
=)
Katherine, I have had CCSVI angioplasty twice, both times having the valve treated and my left jugular will not stay open. After my first CCSVI procedure I felt wonderful relief for about 6 weeks and then it started fading pretty quickly. When I went back in for round two (initially for a separate issue, but my IR looked around since he was already in) all my stenosed veins were as narrowed as before, except for my right jugular which was still mostly open, but my left was even worse than the first time (and most, or the worst of my symptoms are on left side). I also had a stent placed in my left iliac for May-Thurners. I also realized later, after learning so much on this website, that I had had a mast cell episode the day before my 2nd procedure (heat triggered) and I’m sure that did not help things (since I was not on any mast cell stabilizers at the time, etc.). So, treating the valve is not necessarily the only component of getting a good result.
Ever since my 2nd procedure last July I have a achy pain and hardness in my neck where I think my left jugular is and my symptoms have gotten worse. I wonder how blocked it is now.. it was 80% in July and 70% at my 1st procedure. Wouldn’t doubt it is 90% now.
My IR says I need stents in that jugular and my azygos (it won’t stay open either.. it has a web across it that does not resolve with angioplasty) but wants me to try to wait it out till the dissolving stents that are being developed in Europe are available in the US (4-5 more years!). Though at this point, with Dr. Diana’s information about the vagus nerve being pinched between the artery and the jugular in the sheath (and I have POTS) I would now be afraid to get any stent in there that might further pinch the vagus nerve.
I do have a great primary care doctor who watches Dr. Diana’s video’s and has read part 1 and 2 of the Driscol theory – yeah! He is trying to figure out the next steps he wants to take with me based on this new information. One of the things he is wondering is about cutting open the sheath to get the pressure off the vagus nerve. It would seem to me that if the pressure was removed then the mast cell/cytocines/TNF and all the autonomic stuff should clear up, if it is caused by the vagus nerve compression. Am I reading this wrong or missing something?
=)
~~~
Forgive my brief reply…here in Pittsburgh we’re having a WEIRD March 16th Electrical Thunderstorm… love ’em!! but power may go out…
I’m glad you are finding Dr Diana’s site/info helpful…I’m slowly absorbing / consolidating the info which seems VERY “Spot On” and explains many of my own symptoms – Sx – and issues..
That ‘MS’ is possibly- PROBABLY genetic…at least 3 generations I know of in my family have MS…and probable EDS,etc.
…lights are flickering…will write later…!! thanks for reply!! 🙂 kate
Ever since my 2nd procedure last July I have a achy pain and hardness in my neck where I think my left jugular is and my symptoms have gotten worse. I wonder how blocked it is now.. it was 80% in July and 70% at my 1st procedure. Wouldn’t doubt it is 90% now.
I do have a great primary care doctor who watches Dr. Diana’s video’s and has read part 1 and 2 of the Driscol theory – yeah! He is trying to figure out the next steps he wants to take with me based on this new information. One of the things he is wondering is about cutting open the sheath to get the pressure off the vagus nerve. It would seem to me that if the pressure was removed then the mast cell/cytocines/TNF and all the autonomic stuff should clear up, if it is caused by the vagus nerve compression. Am I reading this wrong or missing something?
=)
Ourfullhouse, we need to talk more often!! First, WHO and WHERE is your PCP?!! I WANT him/her!! I, too, have had aching at my treated vein, especially on the right side. If you’ve seen my CCSVI talks, etc. you know that I think we are setting ourselves up for restenosis if we do not have our inflammation under control (I certainly did NOT when I went for angioplasty!). Ironically, if our IJV has a bad valve and becomes very large (and has slightly increased pressure), that is more pressure on the vagus, which then increases inflammation. Heck. I am also considering a neurosurgeon to see if he/she could possibly release the vagus and IJV from the carotid sheath. Is that possible? Would that be enough? I am also considering vagus nerve stimulation (or other forms of decompression). I like the idea of external stimulation and have just started looking into that (can we do a clinical trial if it will only be available in Germany starting toward the end of this year? Obviously, if we can go with something that does not involve a knife, I want to try it! And I agree with you. If we can decompress the vagus, and maybe give our immune system a little PUSH with anti-inflammatory cytokine meds and mast cell meds, homeostasis may result. HOW GREAT WOULD THAT BE? YES, you are thinking along the exact same lines I am. Great minds, huh? 🙂 Diana
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