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by Johnnymac
Mon Apr 30, 2012 9:39 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CRMP-2, Oxidative Stress, CCSVI and MS
Replies: 4
Views: 1709

CRMP-2, Oxidative Stress, CCSVI and MS

Don't post much anymore but after reading http://www.pharmpro.com/News/2012/04/Agencies-and-Organizations-Protein-Block-Could-Halt-Multiple-Sclerosis which was posted over on the CCSVI facebook page earlier it got me thinking about how it could be a piece of the puzzle. Went back and reviewed some o...
by Johnnymac
Mon Apr 30, 2012 8:43 am
Forum: General Discussion
Topic: Protein block `could halt multiple sclerosis`
Replies: 3
Views: 1912

Re: Protein block `could halt multiple sclerosis`

I personally find this very interesting. Regardless of what people postulate, the fact is nobody knows what MS truly is (neurological, venous, combination, bacteria, etc). Personally I feel if we can unlock the mystery behind oligodendrocyte apoptosis it will make a lot of other things more clear. W...
by Johnnymac
Thu Dec 29, 2011 7:47 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: It's official, PP it is
Replies: 7
Views: 1957

Re: It's official, PP it is

She was treated by Dr S, I dont think we could have had a better IR. We haven't given up on CCSVI, just waiting for more of the studies to get done and for good local IRs in Texas to get on board. Neuro wasn't dismissive, just not convinced anything definitive has been determined yet in regards to t...
by Johnnymac
Thu Dec 29, 2011 1:43 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: It's official, PP it is
Replies: 7
Views: 1957

It's official, PP it is

The neuro today confirmed what we've thought for a while now, Court has Primary Progressive MS, not RR. 5 years of no new lesions, gradual worsening of symptoms and no periods of remission. This may be why she didn't see any long term benefit from CCSVI treatment, as it seems the RR group are the on...
by Johnnymac
Wed Dec 28, 2011 7:56 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI, cause or symptom?
Replies: 128
Views: 17973

Re: CCSVI, cause or symptom?

a pulse is just a term for a treatment over a period of a few days, nothing special about that word in particular. The reason I say inflammation of the brain is she had an MRI done at the time which showed measurable swelling, which went away after the steroid treatment and has not come back (yet). ...
by Johnnymac
Tue Dec 27, 2011 6:50 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI, cause or symptom?
Replies: 128
Views: 17973

Re: CCSVI, cause or symptom?

Steroids were a god-send at two different occasions for my wife. When she was first diagnosed back in 06 a 5 day intravenous solumedrol regiment brought her out of an exacerbation and helped her balance greatly. Back then she was still walking. In march of 2010, about 3 months after stopping Tysabri...
by Johnnymac
Tue Dec 27, 2011 1:10 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI, cause or symptom?
Replies: 128
Views: 17973

Re: CCSVI, cause or symptom?

I'm enjoying this thread. One of the challenges the proponents of CCSVI have faced are those anomalies in statistics that cast doubt on it being the genesis of malfunction and MS symptoms. I have no doubt that blood flow is a huge piece of the MS puzzle, but there have to be many many factors that c...
by Johnnymac
Thu Dec 22, 2011 10:28 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI, cause or symptom?
Replies: 128
Views: 17973

Re: CCSVI, cause or symptom?

interestingly, my mind continues to wander toward some oral surgery my wife had. Oral surgery to have wisdom teeth removed in 2003. After this dental work she started suffering from tmj and now has tinitus pretty bad on that side where she has the tmj problems (we've always attributed the tinnitus t...
by Johnnymac
Sun Oct 23, 2011 6:30 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Dr. Zamboni-CCSVI is "difficult to treat"
Replies: 66
Views: 8972

Re: Dr. Zamboni-CCSVI is "difficult to treat"

Hey folks, been a while...needed a break from everything. I think what Cheer is saying is not to be discounted or taken lightly. Unfortunately, Courtney has not had any lasting improvements from her procedure in Brooklyn, and in the last couple of weeks seems to have progressed more. We had one of t...
by Johnnymac
Mon May 30, 2011 8:11 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Mitochondria of Oligodendrocytes: CCSVI (hypoxia)+factor=MS
Replies: 35
Views: 8291

Interesting post, I've been of the opinion for a long time that if we can figure out exactly why the oligodendrocytes are dying we will have a big piece of the puzzle figured out. Check out this thread from a while back looking at it from the iron overload aspect http://www.thisisms.com/ftopict-1126...
by Johnnymac
Sat May 28, 2011 8:45 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Dr. Zamboni's response to Nature magazine
Replies: 14
Views: 3696

It's hard to explain but it involves no Zamboni interviews It's all good, I enjoy a good debate and try to not take things personally. If it involved no zamboni interviews, where did his quotes come from? You make the observance that he is defending himself of claims not made in the article. What p...
by Johnnymac
Sat May 28, 2011 7:21 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: AAN early report on 3 CCSVI studies
Replies: 33
Views: 7383

I think the patient appeal is two fold: 1) this theory actually makes some sense. Current accepted MS theory of Autoimmune is so underwhelming because all they do is describe the body's response, not the underlying condition which they have not been able to identify. This makes CCSVI easier for the ...
by Johnnymac
Sat May 28, 2011 7:04 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Dr. Zamboni's response to Nature magazine
Replies: 14
Views: 3696

Dr Zamboni's responses seem out of place because he's defending himself against claims that were never... Is he defending himself or just answering a question? Without seeing the whole transcript of his interview I would hesitate to saye he's defending himself. Was the question: "Did you have ...
by Johnnymac
Sat May 28, 2011 6:51 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: For Anybody who has Blue Cross, Blue Shield
Replies: 73
Views: 16942

I'm sure this was just an individual mistake here, I had a good experience with AAC billing and I'm sure they will make everything right for you.
by Johnnymac
Fri May 27, 2011 8:56 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: AAN early report on 3 CCSVI studies
Replies: 33
Views: 7383

Why does the right side differ so much from the left side in flow volume (on both pwMS and HC)? Could 'ccsvi' on the right side be more heavily associated with progressive forms of MS since that side seems to carry a larger load?

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