Brian's story

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

Brian's story

Postby Blight » Wed Jun 23, 2010 7:59 pm

Patient Name: Brian

MS History
Male
Age: 57
Diagnosed 2005 PPMS
Lesion locations : Rare, but I have none
MS treatments: extreme no fat, no carb, no sugar, special water, no red meat, no legumes, fruit and veggie diet Diet, in 06. exercise, LDN since for few months in 2006, Prokarin for a few months in 06, Acupuncture from 3 different people in 06 and 07, Stem cell in 09. Stem cell helped for about 3 months. The other did little although to nothing although still on a semi restricted diet and some vitamin D.
MS symptoms before stenosis intervention: Chronic pain, extreme heat and cold sensitivity, no bladder control, can not stand for more than a few minutes, extreme ataxia, spasms when standing, In wheelchair, libido issues. Shaky hands. Irresistible fatigue. Clockwork like worsening progression for 12 years which likely began much earlier. Balance and heat issues that were written off.
EDSS before stenosis intervention 6.0
Stenosis Procedure History
January 29/2010 Buffalo
MRV - Ultrasound - angiogram
Diagnosis: Narrowing of the left jugular. Stenosis in two cranium veins
Procedure: angioplasty of left jugular
Procedure/drug related symptoms: none
Number of relapses since CCSVI intervention: constant progression prior - no relapses prior or after
Impact on MS symptoms: No symptom improvement but significantly, no progression since intervention. Symptom progression had been on pace prior. Given I have PPMS a stop is a godsend.
EDSS 23/6/2010 - 6.0
FSS 23/6/2010 - same
MSIS 23/6/2010 - same
at 1 1/2 months the jugular is still open. Cranium veins too delicate to touch. Mother, her mother and brothers suffered late onset dementia leading to death. That is worrisome.
Brian
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Blight
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Re: Brian's story

Postby Cece » Wed Jun 23, 2010 9:13 pm

Blight wrote:Number of relapses since CCSVI intervention: constant progression prior - no relapses prior or after
Impact on MS symptoms: No symptom improvement but significantly, no progression since intervention. Symptom progression had been on pace prior. Given I have PPMS a stop is a godsend.

Amazing...thank you for sharing...I think this is significant, to read a PPMS report that has some legs under it by now (six months?). No progression is huge, it is not the way this disease works, and I think for the first time the PPMSers can lead the way in proving an MS treatment...because it's the first treatment that works for the PPMSers...and unlike RRMSers we know the expected course for PPMS and it is not what you're experiencing!! :) :) :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
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Joined: Mon Jan 04, 2010 3:00 pm


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