Yipe - sorry to hear her spinal tap experience was not so good. The few times I’ve had lumbar punctures (not for a long time now), the doctor was very slick with the needle - no problems. Hopefully next time it will be less unpleasant.
As many above have noted, MS is a very personal experience.
I was diagnosed with MS in 1980 (I was 29). Back then, they didn’t do MRIs for MS diagnosis, so the initial diagnosis was made through examination of spinal fluid via a lumbar puncture. Conclusive testing via MRIs were then done sometime in the 1980s, and I have had MRIs pretty much yearly since 1996 or so.
From my experience, the critical element is getting a competent neurologist that you are comfortable with, who can interact efficiently with your primary care doctor. In the early 1990s, I had an absolute arrogant fool for a neurologist, who made it absolutely clear that he didn’t want to waste his time with me (since, at that time, I had minimal problems due to MS). I told my primary I was uncomfortable with him, and got another neuro within the medical group. The second neuro has been a godsend.
My current neuro has been ambivalent about most of the treatments currently available for MS (copaxon, interferons, etc), and is still taking a wait-and-see attitude with tysabri. I do have once-a-month infusions of solumedrol (essentially infusable prednisone), which has been (quality of) life-saving. Since starting the monthly solumedral regimen about three years ago, no additional lesions have shown up in my brain in the annual MRIs.
Even so, I get a major flare-up of MS-symptoms approximately every two years or so. The longest one lasted for about 13 weeks (about eight years ago), more frequently lasting three to six weeks. So far, I’ve pulled out of them with little degradation of quality of life, but even if the diagnosis is “relapsing-remitting” (as most of the MS diagnoses are), it is still generally a progressive disease.
If you have “paresthesia” (pins-and-needles feelings in your extremities), exercise can be difficult. I also have balance problems, so extended walking or running is not good (although I do use a treadmill at a gym where I can hold on if necessary). The best exercise I have found is swimming - it puts less strain on my legs.
Just to make life interesting, I was hit with a major case of shingles two years ago (on the trigeminal nerve on the face). It was great having a trusted neuro to deal with this - for some reason my HMO lets me make appointment with my neuro directly without having to go through my primary for each appointment - and I can usually get in to see him within a day or so of my calling for an appointment. I was told that although for most people, once they’ve had a shingles attack, they’re probably safe for the rest of their life, this is not true for people with MS; we can get a second attack of shingles. I guess this has to do with the overall weakening of the immune system.
I have to say though, this is one disease I would not want to have to deal with without gold-plated medical insurance. I can imagine how someone without very good insurance (or no insurance at all) could deal with it.
ETA: Looks like you hopefully won’t need any of my information.