here is food for thought--for a few yrs. now i've had an itchy spot on my back where the scolosis is bad. the caregiver said all she could see there were very little surface veins something like spider veins. she said today there ere more. asking my chiro. today if this could mean anything. he even said out on the limb but in theory when there is something wrong with a main vein collaterals form. say the agyous vein in the spine is jammed up and these collaterals are trying to form. ????
This leads to the issue of chronic bacterial infection -manifesting as vasculitis. Vasculitis in the tiny veins in the brain, and in the larger veins IJV, azygos, iliac, etc. Could a bacterium trigger the changes in collagen in the venule? (semi-rhetorical question)
Perhaps we can live with venous malformations like septa, webs, veering valves and such until the increasing insult from bacteria throws it over the edge into "MS". I would bet that we all have visible vasculitis such as spider veins, and the like.
I hate it when they don't put a picture on the jig-saw puzzle box and half the pieces are missing!
Blossom: I'll ask Dr. Flanagan if he can shoot me a couple of images (it can be hard to do with some of those programs, tho!).
With what info we have (and similar disclaimers used by BlueSky -- <3 that!), you have all of the symptoms of a tiny stroke in your brainstem (just like the doctor on YouTube I mentioned) and because they suspected that at one point, it's hard NOT to lean that way (pun intended).
It doesn't sound like you are having trouble getting oxygen into your brain (no cog fog), which is great.
A connective tissue disorder (and the scoliosis and weak vessels that come with it) is possible. It is SO easy to miss this, which is why I made videos to explain (and show) the major types (coming live soon). I'll holler at you when those are up, OK? There is a LOT to explain with that! I think it's worth considering, for answers if not for treatment.
For what it's worth, I can shed some light on what "traditional medicine" thinks of our little vessels and spots, and what "new thinkers" are wondering...
Johnson, you are right that bacterial infections (actually any infections) can cause these new vessels and vasculitis, but because Blossom's are over her area of scoliosis, I suspect they are collaterals (yes, just like you'd see in our necks with lousy IJV's). Likely, an artery or vein is pinched or damaged because of the scoliosis and collaterals are trying to pick up the slack.
"Traditional medicine" doesn't worry much about telangectasia (small new vessels) or petechial hemorrhages (1-2 mm red spots) UNLESS they come on suddenly, are in the eyes, are numerous, or are associated with some other congenital issues. There are syndromes that cause telangectasias in the brain, and we see other ones in other areas, which lead us to look in the brain (especially with epilepsy). Now, having said that, I think, as most of you do, that we are missing something BIG with these vascular changes.
Let's talk about ME (ha). As a patient with Ehlers-Danlos, but without the vascular form, I still have petechial hem.'s and am prone to spider veins, little telangectasias EVERYWHERE, and as Johnson and BlueSky mention, signs of vasculitis. A couple of things that I am looking at include mast cell reactions (sudafed can help us) and cytokine reactions. (Why are so many of us suddenly 'inflamed'?). And Johnson, why do some of us develop MS, and not others? What IS it that makes some of us more prone to developing MS? I also wonder if Parkinsons may have a similar cause... And for everyone, how many of us have subtle connective tissue disorders that allow antibodies to cross the blood brain barrier and interfere with our brains and healthy neurons?
This is but one reason that I am so interested in your discussion of the change of collagen from 1 to 3. I wonder what the trigger is for that to occur -- it may be the same thing that makes our vessels weak, leaky and, well, "messed up" (that's a medical term).
On Ehlers-Danlos forums, we talk about many of the SAME issues. Dr. Hal Dietz (researcher in vascular EDS) is making some headway and he thinks he is on to something that will result in us taking a pill to "fix" our vessels. I think he'll come forward with it soon.
http://www.hopkinsmedicine.org/geneticm ... dietz.html
More questions than answers, I know. This is why these forums are so important. We can compare notes and hopefully find answers sooner. I am honored to be surrounded by you all -- your level of knowledge and research is humbling.
So, does anyone get flushed when they feel yucky?
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea