Hi Kleiner, I'm sort of in the same basket. I am CIS (Clinically isolated Syndrome), my neuro said it was probably MS, as my sister was diagnosed 20 years ago. I had only one lesion, but it's placement corresponded with the loss of use of my right hand. I had serious fatigue, and stiffness and pain in my joints. I was kind of sent away at that point, with no treatment offered and just lived with it. I'd seen what my sister had been through and just thought I'd go with the flow. Sleep when I had to (every darn afternoon!), brain fog. Not much of a life.
My primary Dr. from that point seemed to attribute all my symptoms to MS and did not look further. I had a label even though I didn't have a diagnosis!
Eventually, two years down the track I'd had enough, and looked into things myself, got hold of all my old blood tests to see what had been going on when I had my first attack (Dr. didn't like that request much!).
Too bad! And found I'd had a mild iron overload over the whole two years, I then asked to be tested for the hemochromatosis gene and had one copy C282Y, which would account for it. My mother and cousin have hemochromatosis. I also had consistently high hemoglobin which I'm attributing to my smoking, which causes lack of oxygen in the blood.
Sounds like similar problems to CCSVI. Iron deposition and thick, de-oxygenated blood.
So on from that, I saw a hemotologist whose only advice was to donate blood. Saw my neurologist, who thought it would be a good idea, (and who then changed his opinion on my MS, the latest letter saying I DIDN'T have MS), whereas the earlier letter said I probably DID.
I've got rid of my iron overload, almost down to anemic now, after 1.5 ltrs of donations. And I'm feeling so so much better.
My hemoglobin is still high, so it's giving up smoking time!
I also saw a rheumotologist and dermatologist as my other symptoms are hyperpigmentation on my arms and bullous rashes my whole life.
They think I possibly have Porphyria (a problem in the creation of heme/blood synthesis). Makes no difference as one of the treatments for Porphyria is blood-letting.. Done!
If I hadn't taken the bull by the horns, I'm sure I'd still be languishing on the couch with a MS label hanging over me.