Hi, all. Got the pictures and the report from my follow-up MRIs. Report says "several" new small lesions, I can find about 5 that weren't there last time, 3 months ago. Also had thoracic and lumbar spine, no lesions, but also no disc problems or narrowing of the - whatever it's called, place where the spinal cord is - that would explain my "sciatica".
It's kinda cool to go scrolling through your innards (got the MRI pictures on CD this time) but it raises other questions. Such as: If the bones in my butt are shaped quite nicely, why is my butt so flat? And: Whose nose IS THAT??
In any event, I don't know if "several" new small lesions are indicative of anything as far as progression is concerned, but I'm not willing to delay meds. In fact I'm now perturbed that neuro is on vacation and won't be back until the 22nd! (My appt is the 23rd.) That's enough time for at least another half-lesion to pop up, for heaven's sake!! Most are in the "right frontal lobe" and "in the region of the external capsule on the right". Just put that in in case someone else has that in their report.
Not feeling badly, however. Weather is wonderful in DC right now, I'm sure that helps. Hope the rest of you are doing well. As always, you are in my prayers,
Hi lilc - Wow - 5 new lesions!!! Let me run this by you...I have heard that sometimes lesions that are not "active" won't show up on MRI. So, is it possible that you've had these small lesions but they were hiding ? Maybe they're not new, just a bit more active right now? Just a thought. If you are starting meds what have you decided on? I am seeing my neuro tomorrow and want to discuss getting off the Rebif and starting the LDN. Don't let the MRI get to you. Sounds like you are doing ok. Take care - Sharon Grace
I'd decided on Copaxone and plan to ask about LDN on the 23rd. Anxious to hear how your appt. goes tomorrow!
Funny thing I don't understand is, none of my lesions (on either MRI) has been "active". Don't know how they can be "new" but not "active". Not freaked out, just know I can't ignore it all! Good luck tomorrow.
I got the results of my MRI and the dr. said positively I don't have MS (that's what he said, you know how it is) and truthfully, I am accepting at this point that I have MS-like symptoms but it's all a result of accident and head trauma (post concussive syndrome). I also see my neuro on the 23rd and am going to ask for Neurontin for the neurological stuff.
however, what I wanted to say is that both my neuro and the guy who read my MRI saw lesions on my MRI but those lesions were either from my injury, or were "to be expected in a woman my age." I am 53. So, perhaps the 5 new lesions are not a progression in the MS but lesions to be expected as we age? What do I know?? But it's a thought.
By the way, the woman who wrote when I asked about itchy paraesthesia and she recommended ice was right on! I tried it last night and it works like a charm!
I hope you continue to feel well, we need you out here with all your great support and wisdom!!
Thanks, Shadow! I'll try the ice next time. The neurontin does help me, and assuming your sx have anything at all to do with nerves, I'd expect it will help you, too!
I've wondered about the aging thing, too (48). The report says "suspicious for demyelinating disease", though. The new ones that I saw are mostly in a little cluster, along with one fairly bright one off by itself. Guess it is the total picture (in conjunction with the LP and such) . But I don't know what makes a lesion look like MS or not!
I truly hope you are on the road to FULL recovery! Let us know how the appt on the 23rd goes!
Nice to hear from you again. I'm happy that you'll be starting on the CRAB med soon. Don't want any new ones sneaking up on us do we ? I know that you said that your taking the neurontin ....do you like it? I had major side effects from it....spacing feeling, dizzy very sleepy.....not good. Anyway I swiched to Elevil .....AKA amitriptyline. Love it.....no side effects and really helps with the nerve pain.. as a matter of fact I don't have it anymore.
It was nice hearing from you again ....keep smiling and good luck on the 22nd .....
Mari, I started slowly with the neurontin, 100mg at bedtime, then 200 now 300. After a while I started 100mg more in the morning, hasn't given me trouble. I have done 200 in the morning a couple of times and was, um, too relaxed to be much good at work! I haven't really had nerve pain, rather the tingling/numbness. It is at a pretty manageable level now, it has been a while since my arm has gone to sleep in the shower! LOL, that might also be because I no longer take HOT showers!
Now that's a question to put out there, what makes a lesion look like MS or not? My first MRI in June 04, the guy reading it (radiologist? Tech?) said it could be demylelinating disease...but this time they said absolutely not (not same guy). I looked at mine (that CD with the images must be a lot better than holding up the films to the window!) and still see that rather large one (5 mm). Anyway...my neuro tells me it can takes years and some people never recover from Post Con Syn...so guess I have decided to be happy that what I have will not progress. However, the sx are so debilitating right now, I'm only working 1-2 hours a day (cleaning stalls in the barn at the ranch we manage). I hope the neuro on the 23rd will tell me I can go back riding and I hope I start getting enough strength so I can ride. Anything using my arms or legs just wears me down fast!
It must be scary to read the report of new lesions, but since you are doing relatively well and are starting treatment, let's hope and pray that those tx will stop that MS in its tracks! I think if the neuro read the report and felt he needed to see you sooner, he would have called and rescheduled. However, I don't think it would hurt a thing to call and voice your concerns...tell the receptionist that you want to make sure the neuro has the report and knows where you stand. I am sure that's what I'd do! If I didn't, I think I'd build up some anxiety and we all know what that will set off!
Let me know how it goes when you go next Friday!
I just had a funny thought (leave it to me!)...there's an old ghost town out in CA here that is called Bodie. It's a state park and it's the greatest because everything is left and preserved just the way the people who walked out of it last left it. They call it, leaving it in a state of "arrested decay." ha! Maybe that's what the treatments and meds do with MS. Is that funny or am I weird?
Shadow, you are funny, not weird! As we age, "arrested decay" sounds pretty good to me!!
I'm actually not anxious at all about the MRI results. It may explain the recent "episodes" where I've felt pretty bad, despite my monolithic capacity for denial! (Wish I knew if I'd spelled that right) But YES, the CD is much better than trying to find white light coming through a window! Bottom line, I'll do the meds. I'm still fully functional and intend to stay that way. Has it ever occurred to you that cleaning stalls is rather taxing? Shoot, I know plenty of YOUNG people who couldn't do it on a full-time basis. Perhaps we set our standards unrealistically high? (Good grief, why do I keep writing such long words, takes SO MUCH thought!)
you should try readin' them long words! ha! Looks like you spelled 'em all correct too (did I mention I'm a cowboy poet and it's imperative that we use "em, readin' and sech!)
My sister says the same thing, that cleaning stalls is hard work, but I only have four and it only takes about an hour or less each day to do it. I'm gonna keep after it as much as I can because I sure don't want to lose the abilities I have left!
Well, I'm glad YOU are the Queen of Denial because I feel everything I experience and let everyone know, ha! Actually, guess we learn that not everyone is interested. Esp when it's so "daily."
Yep, you are right about standards being set too high...it takes some doing but anyone going thru a life changing event has to learn to be happy with who they are and not dwell on the "old me." I'm only recently getting to the place of acceptance. It's a miracle I'm alive and I'm thankful for that!
I do like your pragmatic and positive influence on the message board. You give a lot to those who post here!
im hearing alot about a LDN?? what is that exactly? I am not taking any MS meds at this time other than solumedrol once a month and that alone seems to be working for me. My neurologist wants me to wait another 6 months before she decides if i should start any other meds. I dont want to be on solumedrol forever.