Where are you r lesions and how are they affecting you?
 

Just a little informal poll. My brain is clear (with the exception of a large calcification on my pons) and I am waiting on approval from insurance to do a C-spine MRI.

My symptoms range from tingling, shock feelings, burning of the extremities at night. Pins and needles feeling of my feet when I first get out of bed. Cramps, twitches and poor balance and coordination. I have a hyper reflex on the right knee, and most of my issues are on the right side, with the exception of the tingling/crawling feeling. That is my whole back and scalp. I also have extreme fatigue and muscle fatigue with tremors upon doing anything other than relaxing. Walking, cleaning, writing, holding the baby, etc is very hard for me.

I am sure there are more things I am forgetting, but those are the biggie.

DX: as of now is "Possible MS" based on neuro exam and history. Testing is all coming up withing the month.

No lesions
 

I actually have one very large lesion, old not highlighted, in my frontal lobe that my neuro feels could have happened between birth and a few years ago...it could be the cause of my constant migraines...otherwise I have NO lesions...only apparent damage...

I presented with Transverse Myelitis so I have leg issues...I cannot walk further than 1/2 block before my legs start to tingle and buzz, walk a little further and they start to feel like jello and not like my legs. So I stop and look at things a lot so I can do the shopping...takes me forever but I can get it done. I refuse to use the disabled motor cart...I will when I can no longer walk. :mad:

My legs constantly vibrate, mostly my left leg, and I have random rotating numb spots. I have sharp, excruciating pain in my mid-back, bra-strap area, that requires a lidocane patch and a 1/2 darvocet or sleep to go away. I have sunburn like skin pain on the backs of both arms, my upper back and neck area...air hurts. I get occasional pin pricks of pain on my arms and hands. I have tingling/pins&needles on the left side of my face, my forehead and the top of my head. I feels like goosebumps without the actual goosebumps...pretty constantly throughout the day. The face stuff is really annoying, feels like a breeze sometimes has passed over my head. :confused:

I had optic neuritis last October and lost vision briefly in my left eye. Ever since then I have eye pain in both eyes randomly and sometimes for days at a time. They are more dry then they used to be and get super duper red after a short nap.

I am clumsy and bump into walls from time to time and get dizzy spells now and again. I keep forgetting simple things and have trouble concentrating on occasion. :eek:

I have two.

Both on my spine. One is at C4 (around the neck area) and the other is at T12 (somewhere near the middle of my back if I've read the diagrams of the spine correctly)

I get numbness in my extremeties randomly. It moves around, but stays mostly in the thigh area, but it's wandered all over my body at times.

I dont have any MRI evidence of this one, but I've had one episode of optic neuritis, MRI didnt show any obvious inflammation, but my eye doctor and neuro both said I must have a lesion on the optic nerve somewhere.

My ON started in August of 2006, in the left eye. It's pretty much resolved itself, but starting last summer I began to get weird little ON-like symptoms in my right eye too. The eye doctor said that I probably had some optic neuritis in that eye too. I didnt get an MRI for that one.

When I did get my brain MRI in August of 2006, they did see a few little "spots", but at the time, they said they were not indicitive of MS, so I dont know for sure if those little spots are actual lesions.

Have you been checked for Devic's Disease?

My symptoms have been very similar to yours (started with TM), but I have bowel and bladder issues too. I haven't had ON though.

I gained a lot of lost ground with the use of LDN.

Cherie

i have 6 brain lesions, can't remember the locations. duh, did i say i have memory problems?

i have 2 c-spine lesions.

my feet are numb and i have a lot of neuropathic pain.
my left leg is really weak and i have a bad gait problem.
i can't sit, stand or walk for very long.

my spinal lesions give me bladder problems. but that's controlled with meds.

all in all i'm in pretty good shape. limited but going like the energizer bunny.

Brain
Cervical Spine
Thoracic Spine

Once they saw I was a staggering lesion farm they stopped looking!:eek:

Problems? Yes! Don`t know what is from what, and I can`t change it, so what!:D

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.:eek:

-rosie

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

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.

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.

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.

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.

As of Oct. 2005 - 2 brain lesions and numerous c-spine lesions.

Most of my symptoms are from the waist down and vary depending on remission or relapse - L'Hermittes, vibrations/buzzing, leg weakness, pain, gait issues and internal shaking/tremors. Decreased sensation in feet, left foot being worse. Yet, my feet are hypersensitive

When first diagnosed I was numb from the waist down but rarely do I deal with numbness.

Hi Mama, I have had MS for, going on 45 years now and have never had the pleasure of reading one of my MRIs. My first one was in 1993 and my Neuro said, when asked, that it was typical MS?:rolleyes: I had another MRI with a new Neuro in, around, 2000 and he forgot to have it there, but said nothing had changed since the last one?:rolleyes:

I guess I've had typical RRMS and now SPMS, over the years. ON only once, no chronic pain, no complete paralisis...just the usual pins, pricks, bladder probs., numbness and weakness. 2 major exacerbations in 1974 and 1992, with many smaller ones along the way. Nothing outstanding or earth shattering.

In a Scooter most of the time, but can still walk a little. I haven't had PT for a long time and I think I may need it.:p I'm a lazy butt.:cool: I don't mean to sound to darn possitive, now, it's been a biotch and a long tiring trip. I think I am more acclaimated to it than having a positive attitude. :mad:

The only lesion my neurologist felt was important was the one in my right cerebellum. I don't know how big it is, but on the MRI it's the size of a fingerprint.

My radiologist report said something about T2 punctate lesions in the periventricular area, and white matter involvement of the right frontal horn. Whatever that means.

So with the cerebellum lesion, I've got:

• Right leg and arm spasticity and weakness
• Gait problems
• Bladder and etc. spasticity
• Tremor and head bob

Those are the only ones that specifically relate to the lesion...

My other symptoms are typical for MS:

• Numbness, right and left sides
• Cognitive impairment (worse when I feel worse)
• ON & nystagmus, light sensitivity
• Buzzing, tingling, cold sensations
• short-term memory loss

However, when I tell the neurologist I don't think as well as I used to, he tells me that's not possible, because I don't have a lesion in that area. :mad: Obviously he's a little behind the curve.

I don't remember the exact percentage, but the lesions visible in the brain are only about 20% of the actual damage present.

Don't remember where I read it... But damage on the left side of the brain has been correlated with more depression and emotional response. Those people with damage on the right side of the brain tend to shrug it off and put up with it, even if the damage is extensive. Guess where mine is! :wink:

Thanks, all, for the responses :)

Sorry peoples, serious hi-jack about to follow.........

Although I have RRMS not SPMS, I was diagnosed just over 30 years ago (1977) and never had an MRI until 2001. Lets face it, when we were diagnosed (on symptoms alone) MRI's hadn't been invented then.

I'm glad you have a positive attitude Sally because I believe it keeps us sane through "life after diagnosis".

Now back to the regular thread.......

I have lesions in my brain, my neck and my lumbar spine. I'm so mixed up right now that I don't know which lesion is causing what problem!

At present I have memory loss, fatigue, unsteady gait, leg stiffness, myclonic jerks, and a "sunburn" feeling when I haven't even been out in the sun.

I get neuropathic eye pain, urinary retention & bowel problems, mood swings and did I say memory loss?

I get blurred vision, muscle weakness, footdrop, hypersensitivity to noises, and did I mention memory loss?

The list goes on.

30+ lesions on MRI dated 5/03. Scattered throughout brain. None in spine.

MS now for 20 years. Dx'ed in early 1988 without an MRI. First MRI in 1989 confirmed dx.

I don't know what I am, but I still consider myself RR. I do have some permanent problems - mostly with numbness in my legs.

I've had a dozen or so MRI's over the years. Lesions come and go, dance, swim around, flare up, disappear. First MRI - 3 lesions. Record low in 1994 - 1 lesion. record high - the 30+ in 2003.

I've also had symptoms come and go. The pain in my neck that bothered me for so many years and was one of my first symptoms went away in 2004. The pins and needles in my right hand and right side of my face only existed for the first couple of years. I had seizures 1992-1994 that the docs concluded were MS related. Vertigo and balance issues come and go. The optic neuritis that got me dx'ed hasn't come back.

Tom

I have one large one and 3 tiny ones in the brain this is from my MRI last year I am hoping I ccan talk the doc into getting me one this year on the spine as well.
My eye(loss of somesight) and my leg(tingling and cold) are effected.
I have some tingling in my right hand and on my tummy too but nothing confermed by MRI yet

lesion locations
 

I have 3 or 4 - all in my brain. I have weakness/tiredness in my thighs that comes and goes (mostly if I walk uphill or up stairs, even just a few stairs), weakness in my hands and wrists (they get tired holding onto the steering wheel or typing), my tongue gets tired/weak and it gets hard to talk and/or eat, yawning is difficult too. I have blurry vision for the past year it's been almost constant. I also get shooting pains in my wrists, pains in my right hip, tingling on the bottoms of my feet, and permanent numb spots here and there. Oh, and I also have fatigue problems (though it's been better since starting copaxone) and memory issues!

Thanks. Its the first time anyone has asked me for a list of all my "glitches."