Cherie,

I failed Mayo's NMO blood test, but since there is a 30% chance of failure on the test and still having Devic's...there is no way to tell for sure until I have another spinal attack. My neuro does not want to wait and see what new thing will attack. Since my tests lean towards MS, he is treating me for that. The moment my symptoms take a dive towards Devic's we will switch my treatments...never thought I'd be hoping for MS but I prefer a longer life span over Devic's predicted short one.

-rosie

Yeah, Rosie . . . I hear you loud and clear.

Cherie

I have one lesion in the pons. I have a lot of sensory problems in legs, eg: pins and needles, numbness, cold feelings, so hot it actually feels freezing, a lot of weird feelings that are hard to explain. A lot of memory loss, difficulty with critical thinking, hard time expressing myself, completely hearing something completely different than was said, same with reading. when i was dx I couldn't move my legs and feet at all unless I was sitting or standing. I will never understand that one! Since i have just the one lesion I am still dx as probable.

Oh, how could I forget, fatigue!

I have "at least 9" large brain lesions and one spinal lesion. I can't remember the locations atm. I think I have brain freeze from all this cold weather.

Lets see - a lot of sensory issues like tingling and numbness, the itching is driving me crazy right now (feels like my bones itch and of course the more I scratch the more it itches), icy hot feeling down the back of my legs sometimes, spasms and twitches, major fatigue, dealing with ON atm, weakness, etc.

Probably the weirdest symptom I have and it's due to the location of one of my lesions but I'm just not awake enough yet to remember, is the temperature of my hands. For years my hands had always been cold. After my initial exacerbation they stayed hot, and I mean so hot it's painful to my DH when I touch him and is very uncomfortable for me! I ran it by neuro who said it's due to the lesion and my body is rerouting the blood supply. Apparently the crossed wires are telling my body there's not enough blood flow to my hands so it keeps sending more there, making my hands hot. Strangeness!

As of my August MRI, I have 30+ brain lesions and can't tell you how many on the spine. I try NOT to remember and have to dig up my copy of the MRI to actually know where they are. If I remember correctly C3 was the most "avid enhancing" at the time.

Currently the only issue I have is sort-of a tingling (almost a tightness when they move)in my toes and sometimes it travels up my left foot a little. They like to tingle more when I walk for a bit but will settle down after more walking--or maybe I just get use to it?!

I actually managed to wear my high heels a couple of times and once was to my neuro visit so I consider myself blessed and doing extremely well.

Things come and go occasionally but nothing substantial right now.

I do not have a dx of ms (yet). I had an MRI done and it showed multitude of subcortical and deep white matter punctte hyperintensities in the frontal and parietal lobes bilaterally. I don't know what that means but apparently it is not the normal spot for MS. I also had a spianl tap done and it seemed to further the doc's oppinion that I do not have MS. How accurate are these tests? I am schedualed to have one more MRI to completly rule out MS. The other dx listed on report were migraine disorder, lyme's disease or sequela of microvascular angiopathy. I do not have diabetes or hypertension. My biggest complaint at the moment is intermiten blurred vision, memory loss and an over all weakness in my muscles.

Well, Lyme disease can be treated with antibiotics. I'm still suspicous that's what I actually have (4 known tick bites...one associated with a rash) I think I'd rather have Lyme than MS...

I have one doctor (my regular doctor) who is willing to help me investigate the Lyme further, so I need to scrape together the $600 for the test for the 12 or 13 co-infections. I'm having a private lab test me for that, my doctor said he'd draw the blood for me when I'm ready. (what a nice doctor) He's pretty cool, even if he's just humouring me.

13 plus lesions can be seen in the one picture the neuro printed out for me. I haven't read a report and was just told I have many lesions and have had ms for many years. many same symptoms as what I have read here. I'mwondering how the scan pictures work. Are there other lesions at different layers or locations of the brain or would they all be in this one picture. Any ideas. My doc wasn't very specific with his explanation. He just wanted to start treatment with Beta and said it is not in the beginning stages..... I don't really know what to think. And afraid to ask too many questions...

This may vary. On my films, some of my lesions show up on more than one picture but many do not. But that is probably because mine are relatively small compared to how far apart the slices were. The lesions are/were about 3mm, and pix were also about 3mm apart.

Most are within (if I remember right) about 3 or 4 levels, or pictures.

I asked for copies of my MRI films at the time they were done, and they were ready a few days later along with the report. I called ahead, got the films at radiology and report at Records. You can try that with your tests, too.

Comes in handy for all the doc visits - as if that stuff makes it in time for your appt, iykwim, if you don't bring it yourself.

I got copies of all my medical history from the time I started to go to the doctor's office that I go to now (records go back about 15 or 16yrs) and got myself a 3ring binder and loaded it up with my previous medical history, and then added all the tests for the MS and all the medical problems I've had since the MS symptoms showed up. Put a couple of plastic CD holders that fit in the rings of the binder and added my MRI scans.

When I went to the MS Clinic at one of the local hospitals, the nurse practitioner just LOVED my medical binder. She was so excited that I had everything organized by specialty (neurological, urologic, general medicine..) and that I had copies of my MRI's.

None of my records had ever made it to the Clinic, so she just made copies of what they needed from my stash of info, and burned copies of the MRI cd's. She said if everyone was that organized, her job would be a lot easier to do. Plus, she was able to look at my records and then ask me questions about what was going on and write my answers directly on her copy of the reports.

She was nice and had copies of whatever records the Clinic wrote up on me and had them all in a nice manila folder for me later that week. Neatly arranged in order of importance for me. I made a "MS Clinic" section of the binder, so that if I had to go to another clinic, I'd have exactly what the local MS Clinic tested me for.

This way I dont have to have all my doctors send information separately to any new doctors. I also scanned them into the computer and saved everything to a cd. Did that because the binder was getting heavy. Next time I have to have records delivered, I'm just going to mail a copy of the cd instead. Or carry one with me. Much easier than lugging the originals in the binder.