How do I know what's normal anymore?

[MarkLavelle]

I agree with the others that a second opinion is a good idea...

I'm actually a bit curious about my symptoms. My numbness and tingling started in both feet, then moved into both legs, then into my hands, and lower torso. Both sides of my body are equally affected and there was a consistent onset of numbness spreading from the longest ends of my nerves.

From what I can find, ms seems to affect one or more limbs more sporadically. I haven't read about anyone experiencing peripheral neuropathy in such a consistent manner. Did your symptoms follow the same process? Has anyone heard of numbness that was consistent on both halves of the body and consistent in spreading from the longest end of the nerves?

My experience was nearly the same as yours. My paresthesia may have started in one foot, but not by more than a day, and it spread to most of my skin over the next 3 months.

Have you had an MRI of your cervical spine? I have a c-spine lesion that is almost certainly the source of my paresthesia.

[gbfsfcity]

Yeah, I spent two straight hours in the MRI. The neurologist started receiving the images while I was in the machine and ordered more scans. They gave me the works. They found spots in my brain and spine. In fact they omitted me for a week to monitor my condition while they ran various test on my blood and spinal fluid.

Apparently the area affected was close to areas of the spine that control vision, balance, muscle fatigue, etc. They were concerned and wanted to make sure no new symptoms emerged. The area affected is definitely associated with my symptoms and they are unsure whether the spots in my brain were old or new.

Does the same area tend to be affected in future attacks?

By the way...two straight hours in a MRI...not as fun as you might think it is. For some reason people want to know what it's like. I tell them to crawl under their mattress and lay facing up without moving for two hours while listening to dubstep at a obscenely loud volume level. Kind of sums it up.

[MarkLavelle]

Does the same area tend to be affected in future attacks?

New exacerbations are in new places pretty much by definition, but previously attacked areas can also continue to degenerate (even if they don't have any new demyelination).

By the way...two straight hours in a MRI...not as fun as you might think it is.

Whoa! That's some pretty epic MRI action!

I don't think I've gone much over an hour in the big donut, but I always ask for earplugs, not music, and spend the time meditating/napping (depending on my energy level).

[Twenty Miles]

Hang in there. My first attacks were by far the worst and it took me months to recover. I was eager for a "quick fix". My neuro gave me steroids and said "this is all we can do for now we need to wait and see", after I pushed wanting more he said "sorry I don't have any brain fairy dust I can sprinkle to make it heal faster".

The point is it takes time to heal. I would do everything I could to help in the healing process: sleep, stay hydrated, avoid alcohol etc.

Regarding alternatives to meds. I never took meds and have had MS since 2004. I have seriously altered my diet with the guidance of Tara (on the nutrition part of this message board). I work, travel, etc. Saturday I walked 4.3 miles.

Like you I also bike. I remember in 2003 going on a 17-mile ride that I had ridden dozens of times before and barely making it (my legs felt like lead). The guy riding with me had no pitty and commented "it was worth coming out here today just to be able to kick your ***". I had no idea what was going on. After recovering I am back to biking like before.

For me getting back to "normal" took about 16-months. I changed my diet within 4-6 months.

The reality is every person is different. What worked for me may or may not work for you. I just wanted to share that the healing for me took time and there are alternatives to meds.

[Mable]

Thanks 20 miles

Thanks for your last comment Twenty Miles. I've been waiting to recover from my big flare for 4 months. I get real close...and then get a cold or allergy and the parade of symptoms all rise up again. It's discouraging, but it helps a lot to hear from someone like you who suffered through it and seems to be back on track now.