View Single Post
Old 01-15-2007, 07:28 PM
Footprints Footprints is offline
Junior Member
 
Join Date: Sep 2006
Posts: 24
15 yr Member
Footprints Footprints is offline
Junior Member
 
Join Date: Sep 2006
Posts: 24
15 yr Member
Default

I see people are reading your post but not replying.....so I'll jump in, but I'll say from the outset I'm one of the least experienced. OTOH, I really identify with where you are! I think it's hard to tell another what to do, so it really is up to you and how you deal best with things. It sounds like you are a researcher, so you are probably more proactive than, for example, my sister or mother, who are shutting out the possibility that her 6 brain lesions mean anything despite her neurological problems. Me, I would not stop, personally, without as definite an answer as possible.

When I had similar symptoms, loss of balance, dizziness (I was prescribed some antidizzy medicine that did nada), and eye movement trouble four years ago, my neuro thought of MS. She did bloodwork and MRIs up the wazoo, to rule everything else out. Nothing showed up (not even lesions). I had two lumbar punctures, again nothing. Had a spell of bladder trouble, swallowing, and then later spell of problems with my eyes. I put myself through both those LPs because I *needed* to know; I wanted to be preventative if there was any sign it was MS. There never was, despite my unexplained neurological symptoms. Steroids actually helped me get better, although I ended up with permanent seizures, for which I DO take medication for (and they are under control). Even without the lesions or LP positive results, my neuro did not put the possibility out of the question.....she had me repeat MRIs yearly and said the moment I had a relapse of symptomes, she was going to do another LP. I appreciated her honesty, no matter how scary it was knowing she still wasn't sure I was "in the clear". Luckily, that day has not come. I've been symptom-free (except for seizures) for three years. There are times when I think it's "only" seizures, but then I remember that a three years symptom free does not mean it's gone if it's MS (and I have other autoimmune probs, so it's not like it would be out of the blue).

Then there's my sister. She's been having all sorts of neurological problems-and I just posted about them last week. She has six brain lesions; the surgery to correct the cervical herniation helped a lot, and her neuro is now saying there's no reason to worry about the brain lesions. Without having done any LP. Now, I KNOW the LP is no picnic (!!!), but if it were me (and it was, four years ago), I would want that extra confirmation. I would NOT want the neuro to be blowing it off. Plenty of people hang around at this site and are in "limboland". That's where I was initially, and suppose, in a very minor way, could still consider myself (I'm convinced there's nothing *active* going on, although I think of MS every single dang time I accidentally tip into a wall-going through my head to make sure it was an accident and not an actual neurological loss of balance....). But to say NO, without thoroughly testing for MS.......well, that's not what *I* would do. OTOH, my mom and sister feel okay with it. Actually, feel *better* doing it. And I can see their point, too. Instead of worrying about it....instead of it hanging over their heads......they say the lesions are due to migraine and the neurological problems are all due to the herniation....and go back to their lives. Fingers crossed that's all it was/is (although I find it disconcerting that migraines can cause such significant lesions, because a lesion is a lesion and a lesion in the wrong place, no matter the cause, is a baaaaaaad thing!).

I hope that makes sense. YOU are the one who has to wake up every day and do your thing. I don't have an answer for you, especially since I was questioning the exact same thing regarding my sister's situation. You need to find what works for you. It never hurts to get second and third opinions, either, if that is an easier middle ground solution.

Hugs and good luck!
Footprints is offline   Reply With QuoteReply With Quote