Only 1 lesion
 

Any idea on how unusual it is to be diagnosed with only 1 brain lesion?

My neurologist said I only had one infratentorial lesion - in my right cerebellum. However, the radiologist report said there was white matter involvement around the right frontal horn, some periventricular punctate lesions, and a lesion in the right cerebellum. The other data was blown off by my neurologist. He then scheduled me for an LP. The tests came back saying I had 5 oligoclonal bands, so he decided I had MS.

If my LP had been clear, I would have had to wait for more testing before I was diagnosed, as I understand it.

Thanks for replying. Can I ask how you feel about the possibility of not having been diagnosed as quickly if your LP came back negative?

A girlfriend of mine has numbness/tingling on one side, arm and leg it was so bad she went to the ER. She has one lesion in her brain but they did a spinal MRI and it was clear so now she doesn't think she has MS. Blood work is clear and there isn't any sign of a stroke or cardiac issues. They are going to do a spinal tap but it sure sounds like MS to me so I was just wondering if people routinely get diagnosed with only 1 lesion.

Unfortunately, or fortunately, I had a whole head full of the buggers so my dx wasn't a problem, no LP needed. :D

Jules,
2 Lesions, clear LP, Normal VEP; Fully numb on left side for 2 months, visual problems, history of vertigo= No dx...I'm a possible and will be until it shows again...or not.

That's my story and I'm sticking to it :)

Oh Greenjeans that would make me crazy. I wish I was a neuro, I'd give you the dx tonight! Don't the eye issues count for anything? :mad: I thought they were the magic symptom that always resulted in a MS fast track.

I had RK surgery in 1991 (this was when they cut your eyes, before laser surgery) which gave me 20/20 vision. The Optho/Neuro can't see past those cuts, and when I did finally find him, the flair had passed, so I've yet to be dx'ed with ON. I have residual effects tho that have never left :(

I hope your Friend has an easier time, but this is how so many end up in limbo....

There goes my dinner bell :D Talk to you later!

I don't think you could get a "true" dx according to the McDonald criteria with only one lesion unless she had two defined exacerbations or maybe a positive LP??

Doesn't mean they can't call her subclinical and treat her though. If she's in denial though then it doesn't sound like there's much to do at this point.

I'm multi-lesioned (hah! I invented a new word!) positive LP, but subclinical/infraclinical because I haven't had an exacerbation or symptoms.

I was dx'd with one new lesion and one old lesion in the frontal lobe of white matter. Along with two episodes of ON and abnormal reflexes.

It does not sound like much to me considering what others seem to have when it comes to lesion load.

I have more symptoms than I do lesions.

I had no brain lesions (couple of white dots that were NOT indicative of MS). I did have a history of numbness in the right thigh, from the hip to just below the knee, optic neuritis in the left eye, two spinal lesions (T12 and C4) and burning/freezing cold/thumbtack-filled boots sensation in my feet. (not all of this was at the same time, but over the course of about 7 months)

It was the two spinal lesions that convinced my neuro and he diagnosed me with MS.

I didnt have to get the LP. Both my regular neuro and the neuro at the MS Clinic who gave me my 2nd opinion both discouraged me from getting an LP.

Oh, the MS Clinic neuro also said that I had 4 beat clonus in my feet. That's gone now, when I did the physical therapy last month, the PT guy checked and said I didnt have clonus and he thought I had great muscle tone for someone who sits around crocheting and knitting all day.

I have only 1 lesion so am dx clinically probable RRMS. Although sometimes my neuro and myself wonder if it could be something else because my MRI has stayed the same since 2/97!!!!!!! I have been on Avonex since then. I was dx while I had a lot of memory and sensory problems, positive LP, no feeling or function in my legs while I was sitting or standing but I could walk. Since then I have had 2 relapses, the second one worse than the first. I still have a lot of memory, sensory and fatigue problems. I wish her all the luck in finding a dx. She has a good friend. Oh, I am on SSD. You don't need a positive dx to get it.

There should be a dx criterion in the NMSS web site....that ought to help you both out.

Lesions can be caused by other things, that's why 1 lesion doesn't get a dx....

Good Luck and for her sake, I hope it is something curable.

Jules,

I was diagnosed with no lesions. If it hadn't been for the LP, I'm not sure any one would have thought of MS. Because I had positive LP, ON, and within a few days of steriods, my foot started buzzing (two "whatevers" separated by time and space) I got the "official" diagnosis.

It was about two years after diagnosis before anyone (doctor at UCSF) said they "thought" there *might* be 1 small lesion...(or possibly an artifact).

I haven't had an MRI since, so I don't know if anything else has shown up. But I am proof positive...you CAN have MS with negative MRIs.

Jules, there are doctors that are more aggressive than other doctors....

They would probably wait for a second attack anyway, and by then perhaps more lesions would show up.

Cherie

That is kind of what I was thinking which makes me sad if it causes her to delay starting medications if she is so inclined.

Like Bird said some Doctors are more cautious. I'm really glad mine wasn't although my case seems to have been a slam dunk. Is that a good thing? :rolleyes:

I've had three recordable attacks, and still no dx....some are VERY conservative. Problem for me is that I didn't see the same doctor each time, so its my word. Guess I could get all my records and keep them handy.

Hugs to your friend! :hug:

Greenjeans you are a more patient woman than I am! I'd be causing such a fuss they would probably diagnose me just to shut me up.

Thanks for the kind wishes, I'll let you know how it goes when she has the LP.

I was diagnosed primary progressive with one lesion in my cervical spine, and one tiny lesion in my brain (right periventricular). I have had numerous lumbar punctures, all negative. My MRIs have been absolutely stable (no more lesions, no less) since the first one I had in May of 2003.

Since I'm primary progressive, I have never had an attack, only a slow steady progression of disability. In 2003 I first presented with a slight limp in my right leg. Five years later, my right arm and leg are entirely useless, and my left side is weakening as well. I also have the usual bowel and bladder issues.

I've had my diagnosis verified by several different neurologists (including some of the biggest names treating multiple sclerosis), all of whom comment that although my presentation is highly atypical, they would still classify me as PPMS since I don't really fit any other disease model. Nevertheless, I am still uncomfortable with my diagnosis, and question it daily.

Whatever it is that I have, it sucks, and it's getting worse.

Bear in mind too that they would want to see the right size, shape and location for the lesion, and rule out a differential dx first. There is some pretty good information in the links I attached here about that:

http://neurotalk.psychcentral.com/thread164-3.html

Cherie

Great links, Cherie. I have bookmarked them, thanks!

With all I read, it still seems to me that in a young person who has clear blood work and no immune type condition such as HIV or chemo-induced issues that lesions on the brain are a pretty good indicator of MS.

I have heard this about PPMS and you are right it does suck! What do you think it might be if not MS?

At the program I attended yesterday, the neurologist said there are two criteria for diagnosis of MS....

1 - Poser (old)
http://www.mult-sclerosis.org/Posercriteria.html

2 and the McDonald (new)
http://www.mult-sclerosis.org/DiagnosticCriteria.html

I hope this helps! I tried to find this laid out easy to read in NMSS and other reputable sites, and actually one of them sent me to this!