Followup visit with my MS neurologist

In May I had my yearly followup visit with my MS neurologist. She knew I was thinking of going for the CCSVI operation, so I let her know I did. I gave her a copy of the MRV, and the operating Doctors notes. I told her there were no changes.


She was quite sympathetic but said she didn't expect any changes. She had said before that she had lots of patients that went for this, so I asked if any of them had any improvements. She said lots of them wanted to get better so badly they thought they had improvements but really didn't.  She also went on at great lengths about the placebo effect and how real it is and how the mind can cause the body to release "dopamine" [sp?]. I'm not sure what dopamine is, and really didn't want to get into it with her so simply asked "placebo effects for three, four, six months?"

Her answer was, "if you believe in something, or if you want something badly enough, you might just try a little bit harder, you might do all those little things that help a little bit more, like getting plenty of rest, and exercise, and you might appear to get better. Don't you have some days where you feel better, you feel positive and you walk better?"

My neurologist and the mainstream medical profession clearly have doubts about the whole thing, but their explanation of the apparent successes seem just as dubious. Who to believe.

I guess for anyone to get any real useful information the procedure must go through the rigours of the scientific process.

Of course I'm still looking for a cure or something to relieve my MS symptoms, it is just CCSVI isn't it.

I have a friend who has terminal cancer who sent me a link to the Low Dose Naltrexone Homepage, http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone . It is inexpensive, and according to my neurologist will do no harm. I think I'll give it a try and see what happens.

June 6th, 2011

Well, I had the operation back in January and it is now June and I have had no discernible improvement. My right foot that was somewhat warmer went back to being ice cold a few days after getting back to Vancouver. So, for me, the operation did nothing.

I am, obviously, extremely disappointed, and even a little bit angry. Why didn't this work for me? Am I different again, even within the MS population? Or, is this whole CCSVI thing something that started with good intentions but is now just a big scam? Are all MS sufferers being mislead?