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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Dr. Dake's admission policy

I called Angela and she said Alex would call but it has been over a week. Dors anyone know how long the wait is? No doctor referred me, is this required? Are other tests required other than copies of MRI's? Please help!
Read more : Dr. Dake's admission policy | Views : 3955 | Replies : 21

Getting an MRV... Woot woot!

Not sure if this is where to start... But after learning of CCSVI a few days ago, I've been relentlessly researching this phenomenon. I spoke with my Neuro last night who believes this condition is epiphenomena related and doesn't apply to me, but still agreed to give me a script for the MRV. I do not have a medical background, but do have a critical eye and feel as though I have hope for the ...
Read more : Getting an MRV... Woot woot! | Views : 6291 | Replies : 36

Rokkit goes to Stanford

I've had the appt for a while, but I just bought plane tickets today, so I figured it was time to come out of the closet. Oct 5 is my date.

My case is a little unique in that I haven't been diagnosed with MS. I don't have MS lesions on my MRI. I do have oligoclonal bands in my CSF. I have a symptom history (including neurogenic bladder) consistent with PPMS. Dr Dake agreed ...
Read more : Rokkit goes to Stanford | Views : 4329 | Replies : 38

CCSVI beyond Stanford, and in Boston in particular

Hello -

As I noted in the patient log thread, I had my follow up visit in Boston today, at Brigham & Women's, with a doctor whom Dr. Dake recommended. I asked about other patients going there for CCSVI, and, at least at this point, I think I got somewhat of a lukewarm or mixed bag response. On the one hand, he said that they totally could do the tests, but on the other hand, ...
Read more : CCSVI beyond Stanford, and in Boston in particular | Views : 1366 | Replies : 2

Can It Really Be Fixed?

I've been joyfully reading all the stories of MS improvement here. However, I'm starting to see more accounts of people needing to be re-treated. Maybe the deficient veins in the jugulars draining an MS brain can never be permanently fixed? It reminds me of the efforts engineers have made to keep the Mississippi river in one channel...when they fix it in one place, they create problems upstream or downstream.

Maybe my anti-depressant dosage is too ...
Read more : Can It Really Be Fixed? | Views : 1216 | Replies : 5

Oligoclonal Bands in CSF

Is there any documents of change of Oligoclonal Bands in CSF on patiens who have had procedure?

I assume that this is very important evidence to measure?

sorry for my english skills :oops:
Read more : Oligoclonal Bands in CSF | Views : 1497 | Replies : 6

Lesions and SWI

Many disease modifying treatments use the reduction of lesions as shown on MRI as proof a treatment is "working" in MS. This has baffled me, since we know that the number of lesions does not correlate to level of disease progression. Someone like Jeff or Mel can have 20 brain lesions and function quite well. Someone else can have one or two lesions and be wheelchair-bound. Also, at a certain point, lesion progression stops when ...
Read more : Lesions and SWI | Views : 12549 | Replies : 77

Waiting to hear from Alex!

Hello Everyone!
I am new here. My name is Rhonda. I have had RRMS since 11/03. I just found out Alex will be contacting me this week about getting an appointment with Dr. Dake. I am thrilled.
I also just heard back from my Neuro's nurse........he won't be supporting or referring me. Well, luckily you all have left this invaluable info here for me to draw from, so I knew that would be coming. I ...
Read more : Waiting to hear from Alex! | Views : 3178 | Replies : 27

Where to start? CCSVI

Hi All! New here
I was told by my neuro last week it's more than likely that I have MS.
Ok next step is the LP in a few weeks..But...

After reading through all the information on CCSVI I am sure there is something going on with my veins. I have pressure in my head that I cannot explain and I know something is just not right!

I want to get the needed tests but ...
Read more : Where to start? CCSVI | Views : 1471 | Replies : 5


What do you think about Diosmin and CCSVI? Can it have any positive effects? In US it is sold as a supplement and in Europe on prescription (Detralex).
Read more : Diosmin | Views : 1471 | Replies : 1


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