I have had MS since 1999 (age 46) no prior issues. It hit hard from the beginning. My major problems have been - muscle cramps, spasticity, muscle weakness, cognitive, and muscle "endurance". I have numbness, tingling, balance issues, nystagmus etc. I have never had optic neuritis or fatigue.
I use a scooter for distance and a rollator occasionally.
Over the years I have taken betaseron, copaxone, Novantrone, Tysabri, and zenepax, in addition to symptom drugs. The betaseron and copaxone did not help. The others not only helped, but especially the Novantrone and zenepax resulted in susbstantial improvements. In between the drugs that really worked - lots of IV steroids.
I was scheduled to have the procedure last week, but managed to get Lyme disease the weekend before and due to drug allergies, I have to take antibiotics via pic line for 10 days. When that is through, I will have the procedure a few days later.
Like you DH, relapses are not "spiky" like they are for most RRMSers. They tend to be more gradual - it usually takes about a week for me to be sure it is a relapse and not just something else.
But without the drugs that worked, a steep downhill slide resumes. When I was on Novantrone, I felt so much better I started swimming. By the time the lifetime limit on the Novantrone was reached I was swimming a mile a day (without using my legs that much). The day it wore off (yeah, I know that's normally what happens) I barely made one lap.
The Novantrone is the drug that did the most for me. Don't know if your hubby has tried it. It takes about 3 doses (6 months) to kick in, but it was incredible. At the point I started taking it, I couldn't even read the newspaper because the cognitive issues had gottens so bad that by the time I read the second sentence, I had forgotten the first. I couldn't think of everyday words, etc. Mobility was really bad. If there wasn't a lifetime limit on how long you can take it, I would still be taking it.
I have been on Zenepax until the company ran out of it last month. That is also a great drug. No side effects at all and it has worked very well. The downhill slide is starting, so I am really hoping for the procedure to work. I will be glad to post information as soon as I have the procedure.
My daughter had it 10 days ago and for the first time in 8 years she is actually improving !!!!!
I am having it done at Georgetown Univeristy Hospital in Washington, D.C. My neuro is one of the few doing it. I have been lucky to have him - he believes in agressive treatment.
Novontron hey? We were thinking of trying Copaxone..
My hubby is newly diagnosed and were hoping that the CCSVI will help.
Let us know how you go:-)