This Is MS Multiple Sclerosis Knowledge & Support Community

I don't have MS diagnosis or lesions on the brain/cervical spine. I did have optic neuritis in 2006 with damage- increasing neuro-which exploded with treatment for lyme first with herbs and now just a few weeks of drugs. I have total insomnia ,neuropathy in neck/brain- hard to describe and unbearable, weak and numb extremities, shaky all over, weak neck, neck jerking, body jerking and twitching, burning all over, gait and balance and dept perception all off, ear pain, eye pain,dizzy, face numb etc etc etc-most of which exploded after crash from a few weeks of drugs and herb tea- I'm a mystery- ihave MCS and the LLMD's are telling me lyme and coinfections--but i don't seem to tolerate any treatments what so ever-or it will be living hell for me to go through the lyme treatment if I can make it to the other side w/o damage-since just a few weeks of drugs pushed my body into this living hell ( i was declining neurologically before/but nothing like this)

So just a little bit on my story. So in m y quest to figure out what the Hell I do have since I've seen 2 neuro's with no answers-sought out this guy thanks to this board.

He said I have 2 of the 5 criteria according to zamboni. He said I had reflux in my right jugular-- and also some of the veins were doing the opposite of what they should be doing when lieing versus sitting. I could not follow all of it since I am not as CCSVI literate as most on this board. He is going to mail me my report and I can post details to this board.

I think he mentioned the reflux is one of the worst issues? but I don't have lesions?


I'll post more detail- i think it's all too premature for me. I fully expected things to be normal since I don' t have lesions and seem to pass the neuro's MS tests even though I'm in neuro hell /homebound now for 6 months/in agony/not living life.

He was new at this too-- very nice man/doc and open to treatment if I wanted it.

my personal trip to hell started after a bad fall. did you happen to have a trauma like a fall or some other accident? reason asking is that i have read some posts that people diag. with ppms seem to fit in that catagory. also i have one lesion that even the neuro's say does not look like an ms lesion. again, i have read that ppms lesions are not as prominent in brain but more so in spine if any. ccsvi makes more sence than anything i heard of for the last 20 yrs. if they found a vein problem and you got a dr. that will treat you, i'd sure go for it.

No falls--mine started with fibro 6 months following whiplash accident 12 years ago--then optic neuritis 4 years agon (time of work stress)-increasing neuro since then--greatly accelerated by attempt to treat-created neuro hell =-first from herbs which I mostly recovered from . This time from drugs/herbs -but was in a weakened state to begin with. Lyme md's tell me this was aherx-- likely-but this insane--they say i need aggressive abx treatment- so scared of that sinc herbs then drugs have pushed my body off the cliff--
but have not tried normal abx like doxy etc not sure what i'll do. Doing homeopathy and a flower essence treatment for lyme (yes I do believe in miracles) I just want this to go away or at least go back towhere I was in November before the drugs.

So are you saying ppms has few to no lesions in brain or elsewhere?

whiplash is trauma to neck--seems quite a number of us started our sagas with injury to neck--says CCSVI to me...