Hi Flashover,
Thank you for the clear answer.
As good as this site is, we all have our own barrows to push so I'll try to avoid doing that.
Many of us don't subscribe to the concept that nothing can be done. The issue you have is properly interpreting the medical advice and weighing it against the legitimate needs of your son.
The cardinal feature of MS is demyelination but it is not the only issue. There are also problems with fatigue, mobility, the stomach and the bowel as well as metabolic disturbances.
When I was diagnosed 20 years ago the mantra was all about unknown genetic abnormalities. More often today, we question the behavior of the metabolism and look for environmental and infectious triggers.
A finger is often pointed at Epstein-Barr virus. Did your son have glandular fever? Others look to Lyme disease and its coinfections such as mycoplasma, bartonella, babesia and similar bacteria. Have you lived in an area prone to tick bites?
Did your son become unwell with an obvious infection in the recent past? Has he recently been poorly with symptoms not strictly related to MS?
Regarding testing, what blood tests has he had?
There are lists of tests a mile long and many suggestions about what to do in here.
I would start at the obvious and test for EBV, Lyme, mycoplasmas, bartonella and babesia, chlamydias, rickettsias and anything else that a good doctor can suggest. This is a case of eliminating obvious suspects.
I would suggest a fasting amino acid test. The purpose of that is to test if deficiencies are apparent in normal metabolism by looking at the amino acids you make yourself or if you are deficient in the ones you ingest. If the diet is adequate and a deficiency exists your son may have an infection that is outcompeting his metabolism. Again, look to eliminate the obvious.
The other test I would do is a uric acid test. Uric acid is the final step in purine metabolism. If it is low then we need offset that.
A neurologist will probably suggest a common MS drug. The mechanism behind how some medications work is not well understood (if at all) and side effects can be an issue. There are some drugs that aim to slow the time between attacks by moving the inflammatory response to a different path. They do not aim to cure. Neurologists will say you have limited choices but really your choice for your son is going to depend on how well educated you become. Here's my donation to your task -
http://www.thisisms.com/forum/regimens- ... 24019.html
It could be better written but it's a start. I don't touch CCSVI. Nothing against it, I just look at other things. It would be a big step if the obvious question of infections has not been addressed.
The important thing for you is ask questions. You will get a wide variety of answers but don't obsess about them. Look for a grain of truth that fits the problem you can see. Your best guide will be your son. Listen to him even if he struggles to make himself clear. Tell us what he tells you and there are plenty of us who will probably relate a common experience.
My most usual analogy is to say we are peeling an onion. Go one step at a time but keep asking.
Regards