did they really run enough tests to eliminate ALL else? find out what the new neros say, and work from there. You don't want such vagueness--if they think it is MS, but can't determine exactly, you want to know exactly why they think it is MS. With that info, then come back, and read extensively this whole site. There is much re: nutrition (my preference), meds, chiropractic and osteopathic manipulations (again, my preference), and of course CCSVI. If they do give definite reasons think it is MS, worth getting tested for CCSVI for sure.
Good luck !
L wrote:Well, there's some small comfort in knowing that it's MS because some of those other illnesses are even worse!
You can take some comfort in the fact that the disease course can be fairly slow. It usually is.
You might want to look on the CCSVI sub forum.
Also Biogen, amongst others, are working on drugs to repair neurological damage.
Rituximab is a monoclonal anti body which gives you a very good chance of not progressing. It is used 'off label' at the moment.
All in all, although it's never a good time to get this horrible illness, treatment is better than it's ever been.
Very high doses of vitamin D (10,000 iU +) daily offer a good protection agaist the disease (and various other serious illnesses), it has been recently discovered.
I would look into modifying your diet. Cut out saturated fat for starters.
Um, what else? It's probably quite difficult but try not to dwell on it. It's really not as bad as it seems at first.
OK, looking at your other posts (I was seeing if I answered a similar question a few days ago, but it was someone else) I see that you knew all about CCSVI. It seems to be most effective for the newly diagnosed, as I'm sure you know..
My old neurologist referered me to my current neurologist because I asked for High Dose Cyclophosphamide treatment, and my old neurologist said that he didn't like using such major drugs. My new neurologist gave me Rituxan (Rituximab). The spending did take the best part of a year to get approved by the local trust. Which is a shame because in that year I had a horrible relapse which left me quite a bit worse off.
I haven't done a very good job of answering your question, have I?
Daisy3 wrote:Neuro had some concerns about it being something rare, but that was all fine, so by default it left MS. I wonder if that is because its all he sees.
He has not said what type it is and that concerns me a bit.
Just not helpful at all. And he cost a lot of money as he was private.
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