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I know there has to be a connection if my theory is going to work so someone help me with a theory about how a genetic abnomalities in heme biosynthesis (porphyria) can fit into ccsvi. I have petechia and so does my father. you can read other posts as to what I am getting at.
But why are the symptoms of MS and porphyria different? because doctors follow a diagnostic flow chart pertaining to the damage left behind. we group the damage into catergories and call them different names ie MS, CIDP, AMAN etc. Even autoimmune response is damage. but we dont know what causes any of it. I propse that porphyria is at the end of the flow chart if you are having symptoms that fit no where along the flow chart or like me everywhere along the way, it is only then that we look at porphyria. I ask what if it were at the top of the flow chart. If we gave DNA tests to everyone before MRI, lumbar puncture or anything, what diseases would still exsist?
read my other posts if you dont know what I am talking about. Or maybe the psychosis is making me see connections that dont exsist.

alright I just had an epiphony. when my autonomic nervous system/ parasympathetic is acting up, my arms go to sleep, dead asleep because my autonomic system is constricting and dilating my veins like crazy. my blood pressure is real low when my veins dont contrict. ALL of a sudden I will wake up with my arms asleep because my veins have constricted spontainiously. sometimes they will contrict in my jugular so hard that it feels like my eye balls are going to pop out. I cant hear very well when that happens. what if that is what CCSVI is, My autonomic nervous system constricting my veins and causing reflux

sounds like intermittent high blood pressure, which is one of indications of prophyria--
and which I'm beginning to think is part of the CCSVI problem

tara I'm not following the full flow of your discussion but that bit about arms totally falling asleep on you while in bed rings a bell with me. I have discussed this symptom (one of my earliest) at length with my neuro, and he just says that is not MS. But I strongly believe it is linked to my MS.

I get the dead-arms thing too. Used to always wake up about 3am with dead arms (so I've been lying still for about 5 hrs). It's definitely circulation related. I have found Inclined Bed Therapy has helped enormously. Since doing this, I don't get dead arms. Occasionally my hands will still go dead around 3am (depending on sleeping posture). I wake up, wave them around, and get feeling back.
My theory is that my blood refluxes after lying around for about 5 hrs...which would be hard for a sonographer to test for using Doppler Ultrasound (they'd have to wait 5 hrs!). I've had a doppler test. They found significant vein problems, though didn't witness reflux during the hour they saw me.

hwebb

hwebb,
What kind of vein problems? Structural? stenosis from plaque? or? And what can be done for it?

I get dead little and next finger along (ring finger? I'm not very good at finger identification) some mornings. It used to be every morning..

Does that count?

your autonomic nervous system controls the dilation and contriction. it is a peripheral nervous function so no one would think of MSers having it but you can have autonomic neuropathy without demylination in your peripheral nerves.
I want to state that I do not have MS but here is my history I have had petite mal dejavu siezures at onset of puberty, GBS, demyelinating central nervous lesion, no reflexes left but proof they diminished in ascending order, a bactrim reaction that put me in the hospital with motor neuropathy, after 8 years of testing for rheumatology I am only now getting a sjogrens titer that goes possitive then negative and then back to possitive and the rheumatologists says no way this little titer caused all this damage. My BP drops only during flar ups to 80s over 40s.
My sister, father, his sister and his aunt all have scizophrenia and his uncle on that side had MS.

I am a drug reacting, period aggrovated, sun sensative, alchohol intolerant caucasian women with peripheral, central and rheumatological involvment.

I wonder if the chaos manifests one way in some another in others and in people like me everywhere. why would an ancient gene mutation (dominant) follow rules that present only one way. genes mutate
I think diagnostics are a man made abstract concept to describe and group diseases but just because we put them in different groups defined by their damage ie peripheral=cidp, central=MS, all over=hysteria or porphyria depending onthe doctor, doesnt mean they have different causes. I think we have been duoped

yep my arms fall asleep in bed too and my neuro has said 'that doesn't sound like ms' mind you i have other diagnoses too - like carpal tunnel etc

i have stenosis in my lumbar foraminal and central whats the connection? I have a really stiff neck right now is that dangerous cuz its kinda freaken me out. I dont even know what an emergency is anymore so I just sit and hope things go away.

i don't know tara.. as for my arms i am investigating thoracic outlet stuff.. potential vascular connection, usually brought on by trauma (motor vehicle) i had a bad crash (snowboarding, no helmet, the 'whiplash headsmash') in the week leading up to my ms dx, possibly did some damage they were't really looking for..

bactrim is a sulphur-based antibiotic--typically people with porphyria can't tolerate it or any sulphur based drugs (septra, etc.)
And Tara, Porphyria itself is little understood--even harder than with MS to grasp all the problems caused by this heme malfunction--it is unknown to most doctors other than the name of the disease.
I am finding an incredible cross-over in symptoms of MS, Porphyria, Caradiovascular, Venous Insufficiency---In the end the medical extablishment is so compartmentalized that it is hard to find a doc to be free enough in his/her thinking to encompass all--and getting sent to one specialist after another puts each thing into a catagory, and they end up missing and ignoring stuff that does't fall into these often arbitrary artificial catogories.

Upshot? We need to observe ourselves, research, and connect the dots for ourselves, and then search for any means to heal ourselves.

Tara I'm particularly intruiged by your mention of deja-vu petit mal seizures. Can you explain?

As a teenager I had a couple of years of intense feelings of deja-vu as I walked to school. It was always when I saw a traffic light change! Weird. It was accompanied by a feeling of out-of-body type detachment from where I was, then afterwards intense nausea and a shaky feeling. I think I mentioned it to my GP at the time but he didn't say much, certainly didn't say epilepsy. My brother has epilepsy and we are both coeliacs too. I also have MS. I was sun-intolerant up to 10 years ago but am now ok with the sun.

YES!! at pubery onset I would get a strong sense of dejava. i could see only this. it was like a dream that I once had and then when it was over I could not remeber what was so familiar about it and then i experienced nasea and gag reflex. I had one during either an EEG or ct scan or something and they saw that it was a siezure. google deja va and petite mal siezures. I have mad other posts on it and amazingly others have too and they describe it almost verbatum

I am concerned because I went to the ER last night because I could not move my head, my neck was so stiff. I have had really low blood pressure and when it turned around I had and really strong pressure in my head, like my eyes were bulging out. the ER sent me home because I have warn my credibility out with them. keep in mind that I do not have ms and that I have only had one lesion in my cervical spine and I can only think it was made during a bout that I had in between MRIs because 2002 mri had no lesion and 2004 mri had a lesion that did not contrast.
So in 2003 I had one bout where I had a stiff neck and the back of my head went numb along with my feet and hands.
I am about due for another MRI. wouldnt it be interesting to find a new lesion there. I absolutely pray this not the case but it would be interesting.