Posted: Tue Apr 19, 2011 11:08 am
Here's a pre-CCSVI thread with "pics of spotty bits." Cheer really knows her stuff. I was not around back then.
www.thisisms.com/ftopicp-44754.html
www.thisisms.com/ftopicp-44754.html
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Yes! to the bio-films bluesky. In fact, I had a bio-film problem on one of my feet - contracted at a spa in Japan - and after 13 years with it, finally resolved after 3 months on Abx protocol. It is conjectured that bio-film clogs the Vit. D receptors, which is why we w/"MS" seem to have issues with Vit. D levels. (check out http://www.bacteriality.com).bluesky63 wrote:Just throwing this out -- are the little red dots telangiectasia? I don't know if that's what they're supposed to be called, but I wondered. Mostly because I also have tons of small red dots. This is different from petechaie and purpura, both of which I have had before, mostly when I'm sick or reacting to a med. This happened on plavix.
Johnson -- have you heard of biofilms? That dovetails perfectly with the bacterial theory. And what about boluoke (an enzyme supplement) to address fibrinolysis? I am considering these as additional missing pieces to help with the vascular hypothesis.
https://www.researchednutritionals.com/ ... ode=CBD202
Just thinking out loud here. The usual disclaimers apply -- brain full of holes, no medical degree, think for yourself, sense of humor please, etc. :-)
Hi Everyone!Johnson wrote:
blossom wrote:
...
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!
Yes, PLEASE consider Ehlers-Danlos. We don't know about 80% of the genes for EDS, so a clinical diagnosis is usually the way to go. A skin biopsy can confirm it, but I run through the signs and symptoms of the main types on my soon-to-be website PrettyIll dot com. It may make it easier for you than reading about it (or not. ha)Shoosh: My daughter has hyperfexability of several joints, suffers from migraines and is experiencing some gastrointestinal problems.
Wow. You guys have already been there, done that. I'll know to check out the threads first, next time!Cece: Here's a pre-CCSVI thread with "pics of spotty bits." Cheer really knows her stuff. I was not around back then.
www.thisisms.com/ftopicp-44754.html
I think of it as being like a party here, just because a few people had a conversation at the start of the night doesn't mean another group can't have a similar conversation later. We should learn from what has gone before but not to the extent that we shut down the current conversation when it is new to us!DrDiana wrote:Wow. You guys have already been there, done that. I'll know to check out the threads first, next time!Cece: Here's a pre-CCSVI thread with "pics of spotty bits." Cheer really knows her stuff. I was not around back then.
www.thisisms.com/ftopicp-44754.html
What a story. Glad that he is ok.I developed a new level of respect for viruses that day...
Dr. D,DrDiana wrote: One thought I had concerning the spots (and whether they blanch when pressed on) -- my hubby, who doesn't have MS or EDS (he thinks he has "perfect genes" ha) had an episode of sudden onset of these spots. Before they appeared, his joints became stiff and I rushed him to the emergency room. Petechial hem.'s appeared, and they had to rule out Rocky Mountain Spotted Fever (and did so by finding out that the spots didn't blanch when they used a glass slide to press on them). Spotted fever is caused by rickettsia (carried by ticks).
He left the hospital a couple of days later with the guess that he had a strange reaction to a virus or a viral antibody. But guys, he almost died that day -- his organs were shutting down incredibly fast and he looked like an octopus with all of these IV's in him at one time -- they were 'shot-gunning him' with everything they could think of.
If his vessels and blood brain barrier are "normal" and he got spots from a virus, what the heck does that mean for those of us who are "less perfect"? Yikes.
I developed a new level of respect for viruses that day...
DLB, wow, you had a good doctor. In kids, most docs assume petechiae are viral... Thinking about that - in kids, their immune systems are not great yet, so viruses (etc) can cause symptoms that a "normal" adult would not experience.dlb wrote:Dr. D,DrDiana wrote: One thought I had concerning the spots (and whether they blanch when pressed on) -- my hubby, who doesn't have MS or EDS (he thinks he has "perfect genes" ha) had an episode of sudden onset of these spots. Before they appeared, his joints became stiff and I rushed him to the emergency room. Petechial hem.'s appeared, and they had to rule out Rocky Mountain Spotted Fever (and did so by finding out that the spots didn't blanch when they used a glass slide to press on them). Spotted fever is caused by rickettsia (carried by ticks).
He left the hospital a couple of days later with the guess that he had a strange reaction to a virus or a viral antibody. But guys, he almost died that day -- his organs were shutting down incredibly fast and he looked like an octopus with all of these IV's in him at one time -- they were 'shot-gunning him' with everything they could think of.
If his vessels and blood brain barrier are "normal" and he got spots from a virus, what the heck does that mean for those of us who are "less perfect"? Yikes.
I developed a new level of respect for viruses that day...
Interesting story... my son had an issue similar to this when he was about 12 yrs old. Petechiae all over his torso. The doctor was worried about menengitis & had us come to the hospital every day for blood tests for almost a week. We were planning a ski trip to Montana & he almost never let us go (he was that concerned about this weird thing happening to our son). In the end, he wrote a letter, explaining what he had been testing for, etc, for us to take along. He found nothing in the blood work & made a final assumption that it was a viral thing. This is my son who had a coarctation of his aorta & surgery to correct that when he was 6. He has migraines & cold feet all the time, just like me.... I worry about him - too many similarities....
PCakes! So nice to "meet" you! I <3 your name and avatar, and am unable to look at either without smiling.PCakes wrote:Hi Dr Diana,
Nice to meet ya
Quick question.. Does Ehlers-Danlos carry auditory/inner ear symptoms? I have a sibling suffering with, what was diagnosed as, 'Meniere's' . There are three of us.. I with a CIS MS diagnosis, another with as many connective tissue issues a body might carry and the one mentioned with Meniere's. She presents with extreme vertigo issues, tinnitus and unilateral hearing loss. As a child she loved to 'show off' the ability to 'bend' her fingers.
I had never heard of EDS before this string.
Thanks,
pc
Thanks so much, Sweet Cece. Who doesn't <3 a party? And you are right, it can help to pull out these discussions and update our knowledge. I just hate the thought of pulling folks down ("Jeez, another Newbie who SO missed the first half of the party.")Cece wrote:I think of it as being like a party here, just because a few people had a conversation at the start of the night doesn't mean another group can't have a similar conversation later. We should learn from what has gone before but not to the extent that we shut down the current conversation when it is new to us!DrDiana wrote:Wow. You guys have already been there, done that. I'll know to check out the threads first, next time!Cece: Here's a pre-CCSVI thread with "pics of spotty bits." Cheer really knows her stuff. I was not around back then.
www.thisisms.com/ftopicp-44754.htmlWhat a story. Glad that he is ok.I developed a new level of respect for viruses that day...
DrDiana wrote:PCakes! So nice to "meet" you! I <3 your name and avatar, and am unable to look at either without smiling.
wow!DrDiana wrote:YES!!! EDS and inner ear disorders!!! My sister was also diagnosed with Meniere's
thanks!DrDiana wrote:http://www.hear-it.org/page.dsp?page=1841
will do!DrDiana wrote:Can you bookmark PrettyIll dot com?
what are the signs? I'll 'google'.DrDiana wrote:I'm curious if your sister has any signs of increased CSF pressure in her head,