Leonard wrote:As wheelchairkamikaze wrote: .. there's the distinct possibility that what we call Multiple Sclerosis isn't really one disease at all, but rather a collection of similar diseases that share symptomatic and diagnostic profiles.
Agree with WK. As we saw in Jeff's case, his stenotic dural venous sinus looked a lot more like a lifelong case of idiopathic intracranial hypertension and pseudotumor cerebri (especially with the complete peripheral vision loss in childhood and pulsatile tinnitus), but because he showed up with enhancing lesions on his first MRI, he got put in the MS column. IIH can cause demyelination, but it was never considered. It was only when we saw his MRV, that the full picture became clear. The IVUS completely clarified this issue last month. No valvular issues, only a stenotic left venous sinus, which has, hopefully, been repaired.
There is still much to learn, and Dr. Dake is to be commended for testing and treating central venous stenosis. He was not treating MS...and because of this, I hope he can write up papers on those, like Jeff, who had other, diagnosable issues. There is no IRB approval needed for treating stenotic venous sinus.
Dr. Dake believes the progression may be due to
1. undertreatment/missed flow issues 2. Wallerian degeneration
3. immune system progression separate from blood flow.
It will be many more years before the full picture is illucidated, but Jeff and I are so thankful that Dr. Dake was willing to look at venous stenosis and neurological disease from a new vantagepoint, and to give Jeff his correct diagnosis. He will never recover his eyesight, since it has been decades. But the whoosh is gone, he is awake, no headaches, active. Now, he can finally heal.